The following Guest Blog post was written by my close friend Roberta. (She's camera shy so there won't be a picture for this Guest Blog). I met her through my local endometriosis support group. (For that group - which I started in 2001 - Roberta was Co-Leader with me for part of the time). I have learned an enormous amount from Roberta. Her generosity with sharing her wisdom and introducing me to new modalities is unmatched. I treasure her friendship and I am honored that she agreed to write a Guest Blog post. The story below is an excellent summary of her difficult journey. There is so much more that has gone on behind-the-scenes. Roberta is one of the strongest, most thoughtful, resilient, caring people I know. I know her story will help many. Roberta has training in everything from Reiki to colon hydrotherapy to homeopathy. She works harder than anyone I know to be well. She follows rigid diets (not weight-loss diets... I mean diets for health reasons) that I do not envy. She does physical therapy exercises and Chi Nei Tsang at home. She puts into practice what she learns. She doesn't just talk the talk. She walks the walk. Roberta is truly one of the most thoughtful people I have ever met. She uses every ounce of adversity she has been through to help others by sharing her experiences. She is one very special woman!
My 20+ year ride on a Roller Coaster - by Roberta
At the age of 30 I was a healthy, vibrant, energetic and happy young woman. I had just gotten married for the second time and looking forward to adding to “our” family. I thank God that I was blessed with a daughter from my previous marriage.
I had never experienced many problems with my period. I had at times had some discomfort but it never lasted long nor did it incapacitate me in anyway. That was soon to change. All at once my pains were so intense that I was vomiting and having diarrhea every month. The pains would last from ovulation until several days into my period. Finally after many months and doctors and multiple tests my gynecologist suggested that I have a laparoscopy. I was undiagnosed for 1 more year. The doctor who did the procedure didn’t bother to tell me that I had endometriosis.
I quickly fired that doctor and found a doctor in my area that “specialized” in endometriosis. Confirming the diagnosis he prescribed Danocrine. Unfortunately, Danocrine can only be used for short periods of time before women develop masculine side-effects. I took Danocrine for 1 year had another laparoscopy and nothing had changed. Upon stopping the Danocrine, the pains came back with a vengeance. Two weeks out of every month I was very ill. At 34 I felt I couldn’t take the pain and sickness any longer. I decided to get the complete hysterectomy-after all isn’t that the answer to endometriosis?
I felt fine, I thought. I was put on synthetic hormones immediately and just wanted to go on with my life. Within a year I was having significant muscle pains throughout my body. Additional testing diagnosed me with fibromyalgia at 36. I continued to work part time and take care of my family and home the best I could. Then at 39 my doctor decided that my blood level estrogens were too low so he prescribed a higher dose. Within 2 weeks the estrogen killed my gall bladder so I had my gall bladder removed. I didn’t realize that gall-bladder removal would be so problematic for my digestive system.
At 44 - I have now been diagnosed with leaky gut syndrome. Anything I ate caused me great distress. It took one year to get a food allergy test that concluded I was reactive to almost every type of food. I had lost 30 lbs. in 4 months and looked very ill. After a year of struggling with the leaky gut syndrome I developed chronic fatigue syndrome. The chronic fatigue produced severe, constant flu like symptoms lasting for months.
At 46 - I started the journey of severe hormone imbalance. I developed chronic pelvic pain and for three months I felt like I was delivering a baby. My doctor prescribed a very special type of physical therapy-called a pelvic pain specialist, which provided some relief. My doctor then suggested bio-identical hormones -I got much worse. Finally my husband suggested that I stop the hormones completely-I did. While I felt better initially I still was in need of something else. At just barely 48, I went to my naturopath and was prescribed a homeopathic that helped immensely. It took only 2 months time to get my chronic pelvic pain under control. Believe me when I tell you that YOUR hormones are unique to you and cannot be duplicated in a test tube.
At 52, while having my routine mammogram (something I have done for 20 yrs. after being diagnosed with fibrocystic breast disease) the doctor found a suspicious lump. I returned in a few weeks for a biopsy - I was diagnosed with breast cancer. My lumpectomy and radiation were completed by July 2008.
I feel compelled to write about endometriosis and the over use of hysterectomies in our culture. I certainly cannot say that it could be scientifically proven that my breast cancer, fibromyalgia, chronic fatigue, and leaky gut were a direct cause from the endometriosis and my choice of a complete hysterectomy. However, in my heart of hearts I know that it is so. When we introduce artificial hormones at such an early age we create a huge imbalance of our entire body since hormones reside in every cell not just our reproductive system. I feel that it is absolutely imperative for women under 45 to keep their uterus and ovaries unless it is a matter of life or death. I truly believe that the over use of synthetic hormones is a very dangerous thing.
I have tried to condense my story. As I looked back there were many steps and processes that I didn’t include. The last 20 years of my life has been a very complicated journey. One thing that I try to emphasize to women who are considering hysterectomies is to understand that after a hysterectomy your libido is almost completely gone. There are many women in my family that have had endometriosis and have chosen hysterectomies for their “cures”. All have agreed that if they had known how negatively they would feel about intimacy and love with their husbands, boyfriends or partners that they wouldn’t have undergone such an invasive surgery. You can’t get it back-it’s permanent!!
Now I am 53, and I have fully embraced integrative medicine-(i.e.- acupuncture, homeopathics, supplements, organic foods, massage therapy, herbs, Chi Nei Tsang-chinese abdominal massage). They have been part of my life for the past 10 yrs. These modalities make my syndromes bearable. Yes, it is financially a bit more expensive but emotionally, physically and spiritually it is a bargain. While the initial choice of having a complete hysterectomy appeared to have many benefits- I have learned the hard way that for me it was the most physically debilitating life alteration experience. Personally, I believe that my choice of a complete hysterectomy significantly precipitated the downward spiral of my health.
Hopefully, I have planted a seed of doubt about hysterectomies being a cure all for endometriosis. Indeed they are not. There are many avenues available at this time to assist you in making a more informed decision regarding the short and long-term outcomes of a complete hysterectomy. Use all the complementary medicines that you can find and afford to help alleviate or decrease your undesirable symptoms. It will be worth it in the end. As well, talk with many women who have had the surgery. Believe what they say-they are living the truth.
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
Showing posts with label laparoscopy. Show all posts
Showing posts with label laparoscopy. Show all posts
3/23/2009
2/20/2009
"Jeanne's Endo Blog": What Can I Expect From Having A Laparoscopy???
Today I received an email from my friend Alicia (aka Yaya) of:
Here's what Alicia's email to me said:
After reading Alicia's note, I stopped over to the blog she had mentioned.
By the way, I should highlight the fact that this email from Alicia is a classic example of her going out of her way to help women with infertility and/or endo!!!
Anyway, I posted a lengthy comment on her blog and the thought occurred to me to turn it into a post because several people just this week (!) have come to my attention as being undiagnosed with endo and heading into laparoscopies. Each of these women was anxious!
So in my comment on her blog (see what I posted below)... I explained what I have experienced with laparoscopies. Also, I know MANY women who have had laps and wanted to reassure her that there are plenty of us ready and willing to help her with laparoscopy questions since we've had them (numerous laps for many endo patients).
Here is the comment I posted on the blog:
Confessions from an Impulsive Addict
Impulsive Addict,
Hi! I'm the Jeanne that Alicia (aka Yaya) mentioned above. She sent me an email about you after seeing your laparoscopy post. She wanted to "send you some support".
I have endometriosis and I have had 7 surgeries. Six of them were laparoscopies and 1 was a laparotomy ("major surgery") with a large incision. In that major surgery, I had 2 surgeons working as a team. One removed the endo. The other (a colorectal surgeon) removed a foot of my colon. While they were in there, they discovered a carcinoid tumor on my appendix. So out went the appendix.
I TOTALLY understand your fears and anxiety about having surgery.
Don't hesitate to email me with any questions you have about laparoscopy... because I have had 6 of them!
Here's my email address (written out to foil the robots/spammers): endendo [at] frontiernet [dot] net
Here's my surgery history:
1992: 1st laparoscopy, diagnosed w/endo. Unfortunately, this Dr ended up being a real jerk. I got the correct diagnosis… just no pain relief.
1993: 2nd lap with a more skilled doc who went in and got what the first GYN missed!!
1994: 3rd lap... more endo removed
1996: laparotomy with hemicolectomy/bowel resection due to malrotated colon/paraduodenal hernia that was causing partial intestinal blockage, endo removed again, carcinoid tumor/appendix removed
2003: 4th lap... endo removed again, interstitial cystitis diagnosed via cystoscopy the same day while under anesthesia. (IC and endo often co-exist in the same patient)
2004: 5th lap... believe it or not, the pelvic pain specialist I now see (highly skilled with endo) did not find any endo in this surgery! However, he diagnosed me during this surgery with pelvic congestion syndrome (by also doing a venography to confirm). He also removed a 3" cyst (non-endo type cyst) from my left ovary. This cyst was a "normal" type of cyst that any menstruating woman could have (as far as tissue type) but clearly it needed to be removed since it was 3"!
2008: 6th lap... this lap was for the purpose of cutting a nerve. Nerve cutting is a "last resort" type procedure. I had off the charts pain for several years leading up to this surgery and had gotten nerve blocks, etc. This was one of the 2 out of 7 surgeries where endo was not found. This surgery didn't go as planned. Let’s just say 2 nerves were cut (despite me consenting to one) and the results of the surgery were not good with the nerve cutting (long story). Nothing for you to worry about! Totally different kind of lap.
I’ve had 6 laps so I have lots of personal experience plus I know a slew of people who have had laps as well.
So, if you have questions about laparoscopy, I'm here to help!
Here are some of the "tips" I suggest to women having a laparoscopy:
1) Find out how experienced your surgeon is. Some docs know far more about endo than others. You don't want to have extra surgeries down the road because the first surgery didn't give you the most "bang for your buck". I do not want to increase your anxiety in any way but having a surgeon who really knows endo is really crucial when going into a lap for the reasons you mentioned.
2) Try to relax. It is totally understandable that you are anxious about having surgery --- but worrying about it isn't healthy for you. Whatever coping mechanisms you have to get through the next few weeks without fixating on the lap will help you. Some examples might be: relaxing music, candles (if you're not allergic like me), meditation, acupuncture (VERY HELPFUL!!!!), vegging out & watching TV, blogging, etc... Whatever will distract you from thinking about it will help. Getting all worked up about the lap will get stress hormones going in your body. Not helpful.
3) OK. The surgery. Yes, it's surgery. Yes, it's outpatient. Yes, it's easier than an inpatient (major) surgery... like the 1996 laparotomy that I had.
However, here is a heads up.
In my personal opinion, doctors minimize the recovery time most women need after a lap.
I started a local endo support group in 2001. (That group is where I met Alicia). I have heard many, many stories from women about their recovery time exceeding what doctors predict. DON’T be scared by this but DO give your body TIME and REST after the surgery to properly recover. It’s very important to get rest afterwards!
I've been in endo support groups (the local, in-person kind) since 1992. I have talked with MANY women who have had laps.
I started my blog last June and have heard many more women's stories.
Between the support groups and the blogging, I have heard hundreds of women's stories about their laps. I can try my best to answer any questions you might have.
Obviously I can't give medical advice but I can share my personal experience and the stories of hundreds of other women.
Anesthesia has improved immensely over the years. My last couple of laps were much, much better.
So you are most likely not going to have the type of anesthesia side effects that were common in the 1990s.
The doctor inflates the abdomen with carbon dioxide to allow for better visualization. The laparoscope is used differently by different docs (i.e. number of incisions).
The small naval incision is a given. The question is how many other incisions the doc chooses to make.
Additional incisions allow for instruments to be inserted in multiple locations. (Essentially the doctor can see what's going on much better with the extra instruments/incisions).
If the doc sees something that looks like endo, he/she takes it out. A biopsy is done of the tissue to verify that it's endometrial tissue. Don't be scared by the word biopsy. It's just what they use to tell if it is/isn't endometrial tissue.
Doctors can't always tell endo just by looking at it.
Anyway, assuming you have endo... the doc will remove it, then stitch up the very small incisions (don't worry, they are small), and they'll wheel you off to the recovery room.
You'll wake up... probably feeling pretty feeling foggy. (Everyone's different in how they react to anesthesia). The nurses in recovery will watch you and they have certain criteria to follow on when to switch you from recovery back to your outpatient "room". (It's one of those rooms with curtains for sides but it’s a room).
Once you get to your room, your loved one (hubby in my case, mother in the early years) will tell you what the Dr said about how your surgery went.
You won't talk with the Dr directly until your post-op appt. So it’s important for your loved one to really listen to what the doc says re: how the surgery went, what was found, etc. My husband's phone can do audio recordings. I had him record what the Dr said about my surgery (with the doctor's permission to record his comments). Or the loved one could jot some notes down re: what the doc said post-op.
That way, I didn't have to anxiously wait the 1-2 weeks after surgery to get to the post-op appt & find out what the heck happened. That wait would drive me bonkers!
The post op appts used to always be 1 week after but nowadays they seem to be more like 2. (I personally think 1 week was better).
Anyway, TAKE IT EASY after surgery. Lie down, definitely no lifting, rest, rest, and rest.
Docs tend to minimize when it comes to laps. Surgery is surgery. Yes, you'll be sore. But the pain meds will help and the more rest you get the better you'll feel.
If you try to get too active too soon, it's not good. I've made that mistake. Trust me. You'll want plenty of rest afterwards.
4) Recovery at home... Everyone is different but I would plan on having a very sedentary week after surgery. Some people find it helpful to have a loved one help out. For example, my mother-in-law stayed with us after one of my laps. She took care of my daughter, who was in pre-school at the time while I rested and my husband was at work.
It helps to plan ahead for whatever help you may need.
Don't let anyone pressure you to do too much too soon. Don't buy into any guilt trips. Your body will need time to recover.
Recovery is much better now post-lap than in years past. Docs are better at getting the carbon dioxide out. This is huge because back in the 1990s, I'd get these terrible chest and shoulder pains post-lap and it was the CO2. The good news is docs have improved greatly on getting the CO2 out!
REST, REST, REST
5) Results of lap... if they find that you do have endo, you'll have the proper diagnosis that will enable you to get whatever treatment is appropriate for you.
If it's not endo, the laparoscopy will enable them to look around for other issues.
So the good news is that it's highly likely that this lap will give you some answers or insight or relief... regardless of what it is that they find!
6) I know you're scared. I don't know anyone who doesn't have some fears going into a surgery. These feelings are normal. A first surgery is often scarier because of the whole "fear of the unknown" factor.
That is why I wrote some of the stuff above. While it may not all sound fun, I personally would rather go into something like a lap armed with info than head into "the unknown".
I can provide you lots more info offline if you like.
I have blogged extensively about endo and many women comment on my blog that have not yet had a lap to confirm their endo but strongly suspect they have it.
Feel free to look through my blog because you may find info there that's helpful to you heading into surgery.
I'm generally faster moderating comments than answering direct emails but you're welcome to contact me via either method. :)
I'm sorry to have babbled on so. I just wanted to try to make you feel better. Alicia's email to me had your link and mentioned you were heading into your 1st lap. So I just wanted to stop by and let you know that I'm available if you need an ear or if you have lap questions.
Having had 6 of them, I've learned a few things along the way. :)
I know it's scary and I know the wording on those forms can be freaky.
What may give you some peace of mind is to set up a health care proxy. Sounds complicated but it's not!
You can get the form at any hospital. Here's what I did. I listed my husband as my health care proxy. If I'm unable to advocate for myself or I'm incapacitated in some way, I authorize him to make medical decisions on my behalf.
For example, with my last surgery... I explicitly told my doctor in the pre-op appt "I do not want to have a hysterectomy unless there's cancer”. I went over my wishes in detail with my husband. I designated him as my health care proxy.
That way, I have the peace of mind that my wishes are being respected (say, protecting fertility) while I'm under anesthesia.
That made me feel better. I believe it's so important for patients to advocate for themselves and to delegate that duty to someone they trust if/when they are going to be unable to speak for themselves.
I'm sorry to get all serious on you. It's not all doom and gloom!
They might find endo, remove it, and help you somehow (pain relief? fertility?)
I know MANY women who have had laps that would be happy to talk with you about their experiences. If that would give you any comfort or peace of mind, let me know!
I'm a big believer that "fear of the unknown" is far worse than reality most of the time. Knowing what to expect may calm you down heading into this surgery.
I have posts about coping mechanisms, the healing power of music, relaxation etc. You may find something on my blog that will "calm your nerves" a bit about the lap.
Hang in there!!!! When I read your post and heard how worried you sound about surgery, I felt compelled to respond with this detailed comment because I want to help!
So, use these next few weeks to prepare. Take advantage of the notice to make arrangements for your recovery period, for example. Instead of dreading the wait for your lap, use this time to use or develop coping techniques, relaxation, stress reduction, etc.
I know you'll be relieved to get the surgery behind you. That's understandable. However, if you use this time to prepare, physically and mentally, things will go much more smoothly than you might think.
I hope this comment makes sense. I've had terrible insomnia and have been getting very little sleep lately. So I'm feeling dizzy and out of it right now from being so tired. So I apologize if this comment is talking in circles at all.
I'm exhausted and in pain and on my last little bit of energy right now.
I hope something in here is helpful!!
Again, don't hesitate to contact me if you have questions or just need to talk to someone who has had numerous laps before.
I'm sending positive energy your way and wishing you a smooth surgery and recovery.
Remember... after the surgery:
REST, REST, REST :)
Take care and try to relax... For me, acupuncture is at the top of my list when trying to calm down!
Have a wonderful night! :)
{{Hugs}}
I'm around if you need me!!!
Jeanne
February 20, 2009 5:54 PM
Hopefully this will be helpful info to anyone out there reading this who is wondering about laparoscopies or scheduled for a first laparoscopy.
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
Yaya Stuff
Here's what Alicia's email to me said:
One of my infertile blogger buddies just posted that she has a laparoscopy coming up:
Confessions from an Impulsive Addict
Thought we should keep her on our radar since this is her first one.
Alicia
After reading Alicia's note, I stopped over to the blog she had mentioned.
By the way, I should highlight the fact that this email from Alicia is a classic example of her going out of her way to help women with infertility and/or endo!!!
Anyway, I posted a lengthy comment on her blog and the thought occurred to me to turn it into a post because several people just this week (!) have come to my attention as being undiagnosed with endo and heading into laparoscopies. Each of these women was anxious!
So in my comment on her blog (see what I posted below)... I explained what I have experienced with laparoscopies. Also, I know MANY women who have had laps and wanted to reassure her that there are plenty of us ready and willing to help her with laparoscopy questions since we've had them (numerous laps for many endo patients).
Here is the comment I posted on the blog:
Confessions from an Impulsive Addict
Impulsive Addict,
Hi! I'm the Jeanne that Alicia (aka Yaya) mentioned above. She sent me an email about you after seeing your laparoscopy post. She wanted to "send you some support".
I have endometriosis and I have had 7 surgeries. Six of them were laparoscopies and 1 was a laparotomy ("major surgery") with a large incision. In that major surgery, I had 2 surgeons working as a team. One removed the endo. The other (a colorectal surgeon) removed a foot of my colon. While they were in there, they discovered a carcinoid tumor on my appendix. So out went the appendix.
I TOTALLY understand your fears and anxiety about having surgery.
Don't hesitate to email me with any questions you have about laparoscopy... because I have had 6 of them!
Here's my email address (written out to foil the robots/spammers): endendo [at] frontiernet [dot] net
Here's my surgery history:
1992: 1st laparoscopy, diagnosed w/endo. Unfortunately, this Dr ended up being a real jerk. I got the correct diagnosis… just no pain relief.
1993: 2nd lap with a more skilled doc who went in and got what the first GYN missed!!
1994: 3rd lap... more endo removed
1996: laparotomy with hemicolectomy/bowel resection due to malrotated colon/paraduodenal hernia that was causing partial intestinal blockage, endo removed again, carcinoid tumor/appendix removed
2003: 4th lap... endo removed again, interstitial cystitis diagnosed via cystoscopy the same day while under anesthesia. (IC and endo often co-exist in the same patient)
2004: 5th lap... believe it or not, the pelvic pain specialist I now see (highly skilled with endo) did not find any endo in this surgery! However, he diagnosed me during this surgery with pelvic congestion syndrome (by also doing a venography to confirm). He also removed a 3" cyst (non-endo type cyst) from my left ovary. This cyst was a "normal" type of cyst that any menstruating woman could have (as far as tissue type) but clearly it needed to be removed since it was 3"!
2008: 6th lap... this lap was for the purpose of cutting a nerve. Nerve cutting is a "last resort" type procedure. I had off the charts pain for several years leading up to this surgery and had gotten nerve blocks, etc. This was one of the 2 out of 7 surgeries where endo was not found. This surgery didn't go as planned. Let’s just say 2 nerves were cut (despite me consenting to one) and the results of the surgery were not good with the nerve cutting (long story). Nothing for you to worry about! Totally different kind of lap.
I’ve had 6 laps so I have lots of personal experience plus I know a slew of people who have had laps as well.
So, if you have questions about laparoscopy, I'm here to help!
Here are some of the "tips" I suggest to women having a laparoscopy:
1) Find out how experienced your surgeon is. Some docs know far more about endo than others. You don't want to have extra surgeries down the road because the first surgery didn't give you the most "bang for your buck". I do not want to increase your anxiety in any way but having a surgeon who really knows endo is really crucial when going into a lap for the reasons you mentioned.
2) Try to relax. It is totally understandable that you are anxious about having surgery --- but worrying about it isn't healthy for you. Whatever coping mechanisms you have to get through the next few weeks without fixating on the lap will help you. Some examples might be: relaxing music, candles (if you're not allergic like me), meditation, acupuncture (VERY HELPFUL!!!!), vegging out & watching TV, blogging, etc... Whatever will distract you from thinking about it will help. Getting all worked up about the lap will get stress hormones going in your body. Not helpful.
3) OK. The surgery. Yes, it's surgery. Yes, it's outpatient. Yes, it's easier than an inpatient (major) surgery... like the 1996 laparotomy that I had.
However, here is a heads up.
In my personal opinion, doctors minimize the recovery time most women need after a lap.
I started a local endo support group in 2001. (That group is where I met Alicia). I have heard many, many stories from women about their recovery time exceeding what doctors predict. DON’T be scared by this but DO give your body TIME and REST after the surgery to properly recover. It’s very important to get rest afterwards!
I've been in endo support groups (the local, in-person kind) since 1992. I have talked with MANY women who have had laps.
I started my blog last June and have heard many more women's stories.
Between the support groups and the blogging, I have heard hundreds of women's stories about their laps. I can try my best to answer any questions you might have.
Obviously I can't give medical advice but I can share my personal experience and the stories of hundreds of other women.
Anesthesia has improved immensely over the years. My last couple of laps were much, much better.
So you are most likely not going to have the type of anesthesia side effects that were common in the 1990s.
The doctor inflates the abdomen with carbon dioxide to allow for better visualization. The laparoscope is used differently by different docs (i.e. number of incisions).
The small naval incision is a given. The question is how many other incisions the doc chooses to make.
Additional incisions allow for instruments to be inserted in multiple locations. (Essentially the doctor can see what's going on much better with the extra instruments/incisions).
If the doc sees something that looks like endo, he/she takes it out. A biopsy is done of the tissue to verify that it's endometrial tissue. Don't be scared by the word biopsy. It's just what they use to tell if it is/isn't endometrial tissue.
Doctors can't always tell endo just by looking at it.
Anyway, assuming you have endo... the doc will remove it, then stitch up the very small incisions (don't worry, they are small), and they'll wheel you off to the recovery room.
You'll wake up... probably feeling pretty feeling foggy. (Everyone's different in how they react to anesthesia). The nurses in recovery will watch you and they have certain criteria to follow on when to switch you from recovery back to your outpatient "room". (It's one of those rooms with curtains for sides but it’s a room).
Once you get to your room, your loved one (hubby in my case, mother in the early years) will tell you what the Dr said about how your surgery went.
You won't talk with the Dr directly until your post-op appt. So it’s important for your loved one to really listen to what the doc says re: how the surgery went, what was found, etc. My husband's phone can do audio recordings. I had him record what the Dr said about my surgery (with the doctor's permission to record his comments). Or the loved one could jot some notes down re: what the doc said post-op.
That way, I didn't have to anxiously wait the 1-2 weeks after surgery to get to the post-op appt & find out what the heck happened. That wait would drive me bonkers!
The post op appts used to always be 1 week after but nowadays they seem to be more like 2. (I personally think 1 week was better).
Anyway, TAKE IT EASY after surgery. Lie down, definitely no lifting, rest, rest, and rest.
Docs tend to minimize when it comes to laps. Surgery is surgery. Yes, you'll be sore. But the pain meds will help and the more rest you get the better you'll feel.
If you try to get too active too soon, it's not good. I've made that mistake. Trust me. You'll want plenty of rest afterwards.
4) Recovery at home... Everyone is different but I would plan on having a very sedentary week after surgery. Some people find it helpful to have a loved one help out. For example, my mother-in-law stayed with us after one of my laps. She took care of my daughter, who was in pre-school at the time while I rested and my husband was at work.
It helps to plan ahead for whatever help you may need.
Don't let anyone pressure you to do too much too soon. Don't buy into any guilt trips. Your body will need time to recover.
Recovery is much better now post-lap than in years past. Docs are better at getting the carbon dioxide out. This is huge because back in the 1990s, I'd get these terrible chest and shoulder pains post-lap and it was the CO2. The good news is docs have improved greatly on getting the CO2 out!
REST, REST, REST
5) Results of lap... if they find that you do have endo, you'll have the proper diagnosis that will enable you to get whatever treatment is appropriate for you.
If it's not endo, the laparoscopy will enable them to look around for other issues.
So the good news is that it's highly likely that this lap will give you some answers or insight or relief... regardless of what it is that they find!
6) I know you're scared. I don't know anyone who doesn't have some fears going into a surgery. These feelings are normal. A first surgery is often scarier because of the whole "fear of the unknown" factor.
That is why I wrote some of the stuff above. While it may not all sound fun, I personally would rather go into something like a lap armed with info than head into "the unknown".
I can provide you lots more info offline if you like.
I have blogged extensively about endo and many women comment on my blog that have not yet had a lap to confirm their endo but strongly suspect they have it.
Feel free to look through my blog because you may find info there that's helpful to you heading into surgery.
I'm generally faster moderating comments than answering direct emails but you're welcome to contact me via either method. :)
I'm sorry to have babbled on so. I just wanted to try to make you feel better. Alicia's email to me had your link and mentioned you were heading into your 1st lap. So I just wanted to stop by and let you know that I'm available if you need an ear or if you have lap questions.
Having had 6 of them, I've learned a few things along the way. :)
I know it's scary and I know the wording on those forms can be freaky.
What may give you some peace of mind is to set up a health care proxy. Sounds complicated but it's not!
You can get the form at any hospital. Here's what I did. I listed my husband as my health care proxy. If I'm unable to advocate for myself or I'm incapacitated in some way, I authorize him to make medical decisions on my behalf.
For example, with my last surgery... I explicitly told my doctor in the pre-op appt "I do not want to have a hysterectomy unless there's cancer”. I went over my wishes in detail with my husband. I designated him as my health care proxy.
That way, I have the peace of mind that my wishes are being respected (say, protecting fertility) while I'm under anesthesia.
That made me feel better. I believe it's so important for patients to advocate for themselves and to delegate that duty to someone they trust if/when they are going to be unable to speak for themselves.
I'm sorry to get all serious on you. It's not all doom and gloom!
They might find endo, remove it, and help you somehow (pain relief? fertility?)
I know MANY women who have had laps that would be happy to talk with you about their experiences. If that would give you any comfort or peace of mind, let me know!
I'm a big believer that "fear of the unknown" is far worse than reality most of the time. Knowing what to expect may calm you down heading into this surgery.
I have posts about coping mechanisms, the healing power of music, relaxation etc. You may find something on my blog that will "calm your nerves" a bit about the lap.
Hang in there!!!! When I read your post and heard how worried you sound about surgery, I felt compelled to respond with this detailed comment because I want to help!
So, use these next few weeks to prepare. Take advantage of the notice to make arrangements for your recovery period, for example. Instead of dreading the wait for your lap, use this time to use or develop coping techniques, relaxation, stress reduction, etc.
I know you'll be relieved to get the surgery behind you. That's understandable. However, if you use this time to prepare, physically and mentally, things will go much more smoothly than you might think.
I hope this comment makes sense. I've had terrible insomnia and have been getting very little sleep lately. So I'm feeling dizzy and out of it right now from being so tired. So I apologize if this comment is talking in circles at all.
I'm exhausted and in pain and on my last little bit of energy right now.
I hope something in here is helpful!!
Again, don't hesitate to contact me if you have questions or just need to talk to someone who has had numerous laps before.
I'm sending positive energy your way and wishing you a smooth surgery and recovery.
Remember... after the surgery:
REST, REST, REST :)
Take care and try to relax... For me, acupuncture is at the top of my list when trying to calm down!
Have a wonderful night! :)
{{Hugs}}
I'm around if you need me!!!
Jeanne
February 20, 2009 5:54 PM
Hopefully this will be helpful info to anyone out there reading this who is wondering about laparoscopies or scheduled for a first laparoscopy.
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
10/30/2008
Endometriosis Blog: Dancing With The Stars' Lacey Schwimmer Reports She Has Been Diagnosed With Endometriosis Too **(UPDATED)**
++++++++++++++++++++++++++++++++++++++++++++++++++++++++
UPDATED POST (at 9:19 am on Friday, October 31, 2008)
I have started a petition called:
Create Endometriosis Awareness & Understanding.
If you click the previous link, you will be routed directly to the online petition. I urge you to sign it!
The goal is to get a show like Oprah or The View to feature a story on endometriosis that explains ACCURATELY how endo is diagnosed, what amount of recovery time is needed, etc.
Please see my post about the petition I created last night:
Friday, October 31, 2008 Endometriosis Blog: Please Sign Petition To "Create Endometriosis Awareness & Understanding"!!!
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++
Tonight I opened my email and there was a Google alert email on the topic of endometriosis. I get these endometriosis alerts regularly.
I opened the email and found no less than 10 links about endometriosis!! (Generally these endometriosis alerts contain 1-5 links per email). Every single one of the 10 links was about Lacey Schwimmer reporting that she has been diagnosed with endometriosis and/or info about Julianne Hough's endometriosis/surgery.
See my previous post regarding Julianne Hough's announcement that she has been diagnosed with endometriosis.
TUESDAY, OCTOBER 28, 2008 Endometriosis Blog: Julianne Hough Of Dancing With The Stars Reports She Has Been Diagnosed With Endometriosis & Will Have Appendectomy
Here is one of the links from the Google alert on endometriosis:
TransWorldNews
I am puzzled.
I read through each of the links with reports of Lacey Schwimmer's announcement that she has been diagnosed with endometriosis.
Lacey Schwimmer was quoted in these reports as saying (press releases dated today), "A few days ago, I started feeling very shaky, very weak, and I had awful cramps... I didn’t really know what was going on. I went to go get checked out today and I actually have the beginning onset of what Julianne has,” Schwimmer told The Insider. “It hurts very bad. Right now I’m insanely weak, and the room is spinning.” She went on to say, “I have medication that is taking care of it. We caught it at a very good time” and that she "will not require surgery".
Here is why I am puzzled... The media reports are saying that she was diagnosed by the same doctor that Julianne Hough was diagnosed by. I am puzzled because she, like Julianne Hough, was diagnosed by her doctor as having endometriosis despite the fact that she had not had a laparoscopy to diagnose the condition.
According to The Endometriosis Association, "diagnosis is considered uncertain until proven by laparoscopy, a minor surgical procedure done under anesthesia. A laparoscopy usually shows the location, size, and extent of the growths. This helps the doctor and patient make better treatment choices".
According to The Endometriosis Research Center "endometriosis can ONLY be diagnosed via surgery; diagnostic tests like MRIs and ultrasounds are not definitive".
So my confusion is how both of these women from Dancing With The Stars have been diagnosed with endometriosis prior to having had surgery or without having had surgery???
Those familiar with endometriosis are well aware that it is diagnosed via an outpatient surgical procedure called laparoscopy. I don't understand how the doctor who has diagnosed each of these women is making these diagnoses without the benefit of laparoscopic surgery.
While I understand from news reports that Julianne Hough has a sister and mother who have endometriosis and while endometriosis can be a genetic illness (it runs in my family too), a diagnosis of endometriosis cannot be made based on family history alone.
I understand from news reports that Lacey Schwimmer sought medical attention because she was having similar symptoms to Julianne's. I understand that her symptoms, as described in media reports, are consistent with endometriosis. The thing is that endometriosis cannot be diagnosed based solely on symptoms. There are other illnesses with symptoms that mimic endometriosis.
I am baffled as to how the physician who diagnosed both of these two women did so without performing a laparoscopy to confirm the suspected diagnosis. What about taking a biopsy to verify that the misplaced tissue was, in fact, endometrial tissue??
Laparoscopies are performed for reasons other than diagnosing endometriosis. Wikipedia describes laparoscopies as follows:
Wikipedia entry about laparoscopy
I have had endometriosis for 26 of my 39 years. I have attended endometriosis support group meetings at the local levels since my endometriosis was diagnosed in 1992. I had symptoms for 10 years before I was finally diagnosed properly by a laparoscopy.
I am not a medical professional. Even if I were, I am learning about these women's diagnoses through media reports. Even if I were sitting in the same room with these two women and I were a doctor, I wouldn't know if they were being properly diagnosed with endometriosis without doing a laparoscopy to find that out.
Endometriosis affects an estimated 5.5 million women in North America and it affects an estimated 89 million women worldwide. So it is certainly conceivable that these two women, who displayed symptoms of endometriosis, (and at least one of whom has a family history)... do indeed have endometriosis.
My concern is that neither of these women was diagnosed by a laparoscopy and they both appear on a show watched by many, many millions of viewers.
Many of these viewers undoubtedly never even heard of endometriosis before Julianne Hough and Lacey Schwimmer were diagnosed with endo.
My concern is that the general public may be getting misinformation about how endo is diagnosed... based on the news reports of Ms. Hough and Ms. Schwimmer.
Numerous websites imply that Ms. Hough's appendix was removed pre-emptively because cysts might have formed on it at a later date. Huh? Maybe there are some facts that the media is not reporting but that sounded odd to me. Plenty of women with endo hang onto their appendixes unless they become covered in endo.
Julianne Hough announced she was having an appendectomy on the air the night BEFORE her surgery. News reports also indicate that Ms. Hough had symptoms for 5 years but had not had a laparoscopy prior to this week. Therefore, the surgeon had (by all accounts) not yet seen her appendix before this week's surgery.
Ms. Schwimmer's diagnosis is described in numerous links as having been "caught early". The way that it is worded implies that because her endometriosis was caught early, she does not require surgery at this time. Fair enough.
She said (as quoted above) that medication is "taking care of it". I don't understand how her endometriosis symptoms are likely being managed well enough to make informed treatment decisions when she just got diagnosed today (if the media has the timeline straight)... WITHOUT a laparoscopy (considered the means for diagnosing endometriosis definitively by doctors and endometriosis organizations around the globe).
I understand that her interviews repeatedly mention her endo was "caught early". However, in my experience, women who suffer endo symptoms severe enough to send them in to their doctors for answers cannot possibly manage their symptoms within a matter of 24 hours or less from diagnosis... regardless of how "early" it was "caught". Sure, she may have been given a strong painkiller that has alleviated the type of pain that sent her to her doctor. I just don't understand the way her statement to the press was worded.
I don't mean to sound critical of her (or Julianne Hough) in any way!!! I'm just confused about the wording of things. It may well be that she is quoting her doctor verbatim. I have no clue. My concern is how the public will process these announcements. I am just concerned that the general public may be getting a skewed view of how endo is diagnosed, how it is managed, etc.
The medical condition of these two women is their personal business. Since they have both announced their diagnoses to the world, however, I believe it is important to use this as an opportunity to inform the public about endo. I worry that the media statements that have been made could be giving the public a fuzzy picture, at least, and maybe even a misleading picture, at most, on what sort of impact endometriosis typically has on patients properly diagnosed with it via laparoscopy.
It is very unfortunate that these two women are experiencing such symptoms at all... much less during an intense, physically demanding competition. They may well both have endo.
I just worry that neither one seems to have been diagnosed by laparoscopy. This could confuse the millions of viewers of Dancing With The Stars.
This is an opportunity to EDUCATE the public about this illness. I sincerely hope that is what will happen!!!
I'd like to add a comment that was posted on a website by a woman named "Heather". It nicely sums up the opportunity we have for media attention on educating the public about endo. This comment was posted on the following site:
Fancast: Inside TV
Heather posted this comment to Julianne Hough:
"I am so sorry to hear that you were diagnosed with Endo. However at the same time you are so very blessed to have been diagnosed at such a young age. I wasn't diagnosed until I was 34 after almost 20 years of suffering with the disease. So many doctor's told me what I was experiencing was just normal heavy painful periods. However my pain was throughout the whole month with also extremely painful ovulations. Unfortunately being that the Endo did not get diagnosed for so very long I am now at stage 4. Endo is on just about every organ. Bladder, liver, ovaries etc..... Thankfully after a few years of trying my husband and help from fertility treatments we conceived our miracle daughter Sophia Izabella who is now 6 years old.
I know you are newly diagnosed but Julianne you have a voice for this disease. So many millions of us women have tried to get the word out about Endo. We want to get the word out about it so, so many teen girls and women don't have to suffer for so many years before getting diagnosed. I have written tons of letters to Oprah, The View and many others in hopes of getting the word out but no one seems to care. It affects millions and millions of teen girls and women. Sadly even my own OB/GYN isn't very educated about it. Pretty much she says all she can do is put me on continous birth control pills to help. Anything you can do to help would be so appreciated. I would be more than happy to help you in anything you can do. Thanks so much Julianne
Posted by Heather | October 28, 2008 4:59 PM
Heather brings up a very good point. High-quality information about endometriosis should be disseminated to the public! Heather mentions having contacted Oprah and The View. These shows have predominantly female audiences and would be perfect vehicles for accurate information to be shared with the public. Ideally, the dancer or dancers would be interviewed on air with renowned gynecological surgeons who can speak to how to properly diagnose endometriosis and whether such physical activity is (in Julianne's case) advisable shortly after surgery.
It's enough to make me want to start a letter-writing campaign to Oprah and The View requesting that they feature endometriosis as the serious illness it is... and feature experts in the field who can speak to the complexities of this illness which baffles doctors and patients alike.
My acupuncturist tells me that in Traditional Chinese Medicine, "endometriosis" is actually 6 different illnesses. There are many different symptom sets for endo patients. Some women have no pain and discover their endo via a laparoscopy searching for the cause of infertility. Some women suffer debiliating pain. Some women have extreme pain and infertility. Some women with endo are within that spectrum somewhere.
I worry that the sound bites and gossip magazine reports on Julianne Hough and Lacey Schwimmer may do more harm than good IF someone respected from the medical community doesn't step up and say things like "diagnosis is considered uncertain until proven by laparoscopy, a minor surgical procedure done under anesthesia. A laparoscopy usually shows the location, size, and extent of the growths. This helps the doctor and patient make better treatment choices" or "endometriosis can ONLY be diagnosed via surgery; diagnostic tests like MRIs and ultrasounds are not definitive".
Or perhaps representatives of The Endometriosis Association and/or The Endometriosis Research Center could issue a statement to the press about the importance of laparoscopy in diagnosing endo???
The typical endometriosis patient who is NOT a celebrity could write letters to Oprah or The View until the cows come home and may never get endo featured on these shows.
If, however, one or both of these women from Dancing With The Stars were to appear on one or both shows (ACCOMPANIED BY PHYSICIANS SKILLED AT DIAGNOSING AND TREATING ENDOMETRIOSIS), such a show just might happen.
Short of that happening, I think it would take a massive letter-writing campaign to one or both shows to get proper coverage of this illness. Women with endometriosis suffer so much! They deserve some validation, understanding, compassion, and awareness of endometriosis!!
So if you or a loved one has endo and wants to help me organize a letter-writing campaign, please post your comments here. If we work as a team, we can turn this unfortunate situation for Ms. Hough and Ms. Schwimmer into an opportunity to educate the public and help endo patients!!
I would greatly like to hear from as many people as possible about the letter-writing campaign.
Who's in????????
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
8/05/2008
Endometriosis Blog: My Personal History As An Endometriosis Patient
I decided for today's post to go back to the "beginning" of my journey with endometriosis. I feel I should give some background on what led up to the diagnosis… to put things in context. After 10 years of suffering, I was finally diagnosed with endometriosis by a laparoscopy at the age of 23.
My middle school and high school years were marred by agonizing pain, massive bleeding problems, very irregular cycles (some cycles were just 16 days long and other times I would go a couple of months without a period at all). Most of the cycles were very short, though! It seemed I was always either about to get my period, that I actually had my period, or that I was recovering from the traumatic experience of having my period (which averaged 10-11 days back then)! Then it would start all over again way too soon. So I usually had about 5-6 days to “recover” and then my next period would begin! It took over my life in many ways…
The pain was so severe that I actually passed out one day when I was 14. I had a friend over for a sleepover. It was a hot day. I have always had heat intolerance so this didn't help matters. The pain was what knocked me out, though! It was excruciating! (Hot day or not, we were indoors eating breakfast so it wasn't like I was in the sun or anything). I just remember feeling very, very sick and then kind of flopping over sideways in my chair. My family and my friend later told me that my face turned greenish when I passed out. That is how sick I felt... sick enough to turn green! They thought it was some sort of heat exhaustion but I knew better. As I said, the heat certainly didn’t help BUT I passed out right in the middle of an episode of the most INTENSE abdominal pain ever!!!! This was no coincidence. (In years since I have passed out other times during my period, regardless of the weather).
Anyway, to fast forward a bit... high school was really tough! There were days when I was simply to sick to be at school. I never had the sense to not go to school in the first place on these particular days. Fortunately my best friend (the same one mentioned above with the sleepover fainting incident) had a father with a flexible work schedule that allowed him to pick us up from school early rather than take the bus home.
Since my friend and I got extremely good grades, missing an occasional class wasn't really that big of a deal and had no negative impact on our grades or our understanding of the subject matter. (I’m certainly not advocating skipping school; I always got a medical excuse or whatever the school required before leaving. I was a big rule-follower)! We had the option of scheduling our study hall when we wanted as seniors in high school and we scheduled ours for the end of the day so that we could get a pass from the office and leave early (with parental permission).
So we often would call her father for a ride before our school day was technically over (missing one class) or as soon as it was study hall time because I was just too sick to stay in school! Getting through a school day was, at times, all I could do… just to survive another school day. It took every fiber of my being to do it!
I distinctly remember sitting in the front entrance of the school one day with the most nauseating, horrendous menstrual cramps and abdominal pain imaginable. My friend and I were waiting out front for her dad to pick us up. I didn't care how I looked or who saw me sitting there sobbing. I was just too sick to care! The pain was far too intense to put on my happy face and “act normal”. I just kind of curled up in a ball with my back against the wall and cried. My friend did anything she possibly could to cheer me up. (She and I had been friends since 4th grade and she was good at cheering me up).
Anyway, I remember seeing her father's car pull up in front of the school and being SO relieved! We'd go to her house and I would just lie on the bed in her room and cry. This happened quite a bit. It was not a fun way to go through high school.
In my college years, I managed to graduate with a 3.65 GPA despite the fact that I often had to leave mid-class and duck into the rest room because I was so very sick. It was very challenging! I did whatever I had to in order to "catch up" on anything I missed for all of the inconveniently timed trips to the bathroom. It was exhausting and many tears were shed in those college bathrooms! Honestly, I look back and I don’t know how I did it!
Anyway at the age of 23 my gynecologist tried a couple of different birth control pills to try to tame my symptoms. The pills he gave me made me much, much sicker. He then told me he thought I might possibly have a disease called endometriosis. He explained that to see if I had endometriosis a surgical procedure called a laparoscopy would need to be done. While I wasn't wild about the idea of surgery, I certainly wanted to do anything I possibly could to find out what was wrong (because there was no doubt that something was very wrong)!!!
So in 1992 I had my first laparoscopy. My gynecologist diagnosed me with endometriosis. He said he had "cleaned me out" and implied that I was going to start feeling much, much better now. Well that relief he promised never came! (Just 10 months later, another surgeon who was MUCH more experienced with endometriosis did another laparoscopy and found lots more endometriosis)!
After the first surgery, my GYN put me on yet another different birth control pill. I was the sickest ever! I was having all of my usual symptoms (terrible hemorrhaging, agonizing menstrual cramps, nausea, diarrhea, etc). In addition, I was now experiencing extremely severe hot flashes and other new symptoms. Plus I was still recovering from the surgery itself. I was sicker than ever! (I now know from various conversations with pharmacists and other gynecologists that the class of birth control pills he had me using is not a good choice for endometriosis patients and it was why I had the TERRIBLE hot flashes)!
I was working lots of hours and being so sick was making it almost impossible to function at work or home. Between the pain, the bleeding, the exhaustion, and the hot flashes… I was very ill!!!
Once I had a diagnosis of endometriosis, I was hungry for any information I could get my hands on. So, sick as I was, I went on a “hunt” for anything I could possibly find about endometriosis. Let’s just say that the information I found initially was scant to say the least! My GYN gave me a very skimpy brochure on endometriosis that was published by a pharmaceutical company pushing their product. This was not exactly an informative brochure! That’s it. When I asked him about other resources available on endometriosis, he couldn’t come up with anything else!
I then went to my local library. This was a fantastic library that had always had what I needed when I needed it. I searched for any information I could find on endometriosis. I found NOTHING! I asked the librarian for help. She was also unable to find a single bit of information on endometriosis. Being 1992, I didn’t have the Internet to turn to as an endometriosis resource. I was not a happy camper!
I went to various places. Finally, one day I went to the local Barnes & Noble bookstore. I spent hours & hours combing through books in the women’s health and self-help book sections. I searched and searched. I found very little. A couple of books had the word endometriosis in the index but when I turned to the only page listed for it, there would simply not be any helpful information.
Then I made an important discovery! Tucked in the back of one of the books in the “resources” section was information on The Endometriosis Association. I scribbled down the contact information for The Endometriosis Association and was very pleased to have found an entire organization dedicated to endometriosis education, support, and research. (The rest of that book didn’t really interest me so I didn’t purchase it).
I had what I needed: contact information for an organization dedicated to endometriosis!
I went home and called The Endometriosis Association!
Since this post is already quite lengthy, I think I’ll stop at this juncture and save the next part for another post!
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
So please stay tuned to find out how The Endometriosis Association helped me to learn about the illness, get needed support, and feel less alone!!!
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
My middle school and high school years were marred by agonizing pain, massive bleeding problems, very irregular cycles (some cycles were just 16 days long and other times I would go a couple of months without a period at all). Most of the cycles were very short, though! It seemed I was always either about to get my period, that I actually had my period, or that I was recovering from the traumatic experience of having my period (which averaged 10-11 days back then)! Then it would start all over again way too soon. So I usually had about 5-6 days to “recover” and then my next period would begin! It took over my life in many ways…
The pain was so severe that I actually passed out one day when I was 14. I had a friend over for a sleepover. It was a hot day. I have always had heat intolerance so this didn't help matters. The pain was what knocked me out, though! It was excruciating! (Hot day or not, we were indoors eating breakfast so it wasn't like I was in the sun or anything). I just remember feeling very, very sick and then kind of flopping over sideways in my chair. My family and my friend later told me that my face turned greenish when I passed out. That is how sick I felt... sick enough to turn green! They thought it was some sort of heat exhaustion but I knew better. As I said, the heat certainly didn’t help BUT I passed out right in the middle of an episode of the most INTENSE abdominal pain ever!!!! This was no coincidence. (In years since I have passed out other times during my period, regardless of the weather).
Anyway, to fast forward a bit... high school was really tough! There were days when I was simply to sick to be at school. I never had the sense to not go to school in the first place on these particular days. Fortunately my best friend (the same one mentioned above with the sleepover fainting incident) had a father with a flexible work schedule that allowed him to pick us up from school early rather than take the bus home.
Since my friend and I got extremely good grades, missing an occasional class wasn't really that big of a deal and had no negative impact on our grades or our understanding of the subject matter. (I’m certainly not advocating skipping school; I always got a medical excuse or whatever the school required before leaving. I was a big rule-follower)! We had the option of scheduling our study hall when we wanted as seniors in high school and we scheduled ours for the end of the day so that we could get a pass from the office and leave early (with parental permission).
So we often would call her father for a ride before our school day was technically over (missing one class) or as soon as it was study hall time because I was just too sick to stay in school! Getting through a school day was, at times, all I could do… just to survive another school day. It took every fiber of my being to do it!
I distinctly remember sitting in the front entrance of the school one day with the most nauseating, horrendous menstrual cramps and abdominal pain imaginable. My friend and I were waiting out front for her dad to pick us up. I didn't care how I looked or who saw me sitting there sobbing. I was just too sick to care! The pain was far too intense to put on my happy face and “act normal”. I just kind of curled up in a ball with my back against the wall and cried. My friend did anything she possibly could to cheer me up. (She and I had been friends since 4th grade and she was good at cheering me up).
Anyway, I remember seeing her father's car pull up in front of the school and being SO relieved! We'd go to her house and I would just lie on the bed in her room and cry. This happened quite a bit. It was not a fun way to go through high school.
In my college years, I managed to graduate with a 3.65 GPA despite the fact that I often had to leave mid-class and duck into the rest room because I was so very sick. It was very challenging! I did whatever I had to in order to "catch up" on anything I missed for all of the inconveniently timed trips to the bathroom. It was exhausting and many tears were shed in those college bathrooms! Honestly, I look back and I don’t know how I did it!
Anyway at the age of 23 my gynecologist tried a couple of different birth control pills to try to tame my symptoms. The pills he gave me made me much, much sicker. He then told me he thought I might possibly have a disease called endometriosis. He explained that to see if I had endometriosis a surgical procedure called a laparoscopy would need to be done. While I wasn't wild about the idea of surgery, I certainly wanted to do anything I possibly could to find out what was wrong (because there was no doubt that something was very wrong)!!!
So in 1992 I had my first laparoscopy. My gynecologist diagnosed me with endometriosis. He said he had "cleaned me out" and implied that I was going to start feeling much, much better now. Well that relief he promised never came! (Just 10 months later, another surgeon who was MUCH more experienced with endometriosis did another laparoscopy and found lots more endometriosis)!
After the first surgery, my GYN put me on yet another different birth control pill. I was the sickest ever! I was having all of my usual symptoms (terrible hemorrhaging, agonizing menstrual cramps, nausea, diarrhea, etc). In addition, I was now experiencing extremely severe hot flashes and other new symptoms. Plus I was still recovering from the surgery itself. I was sicker than ever! (I now know from various conversations with pharmacists and other gynecologists that the class of birth control pills he had me using is not a good choice for endometriosis patients and it was why I had the TERRIBLE hot flashes)!
I was working lots of hours and being so sick was making it almost impossible to function at work or home. Between the pain, the bleeding, the exhaustion, and the hot flashes… I was very ill!!!
Once I had a diagnosis of endometriosis, I was hungry for any information I could get my hands on. So, sick as I was, I went on a “hunt” for anything I could possibly find about endometriosis. Let’s just say that the information I found initially was scant to say the least! My GYN gave me a very skimpy brochure on endometriosis that was published by a pharmaceutical company pushing their product. This was not exactly an informative brochure! That’s it. When I asked him about other resources available on endometriosis, he couldn’t come up with anything else!
I then went to my local library. This was a fantastic library that had always had what I needed when I needed it. I searched for any information I could find on endometriosis. I found NOTHING! I asked the librarian for help. She was also unable to find a single bit of information on endometriosis. Being 1992, I didn’t have the Internet to turn to as an endometriosis resource. I was not a happy camper!
I went to various places. Finally, one day I went to the local Barnes & Noble bookstore. I spent hours & hours combing through books in the women’s health and self-help book sections. I searched and searched. I found very little. A couple of books had the word endometriosis in the index but when I turned to the only page listed for it, there would simply not be any helpful information.
Then I made an important discovery! Tucked in the back of one of the books in the “resources” section was information on The Endometriosis Association. I scribbled down the contact information for The Endometriosis Association and was very pleased to have found an entire organization dedicated to endometriosis education, support, and research. (The rest of that book didn’t really interest me so I didn’t purchase it).
I had what I needed: contact information for an organization dedicated to endometriosis!
I went home and called The Endometriosis Association!
Since this post is already quite lengthy, I think I’ll stop at this juncture and save the next part for another post!
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
So please stay tuned to find out how The Endometriosis Association helped me to learn about the illness, get needed support, and feel less alone!!!
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
7/14/2008
Jeanne's Endo Blog: YouTube Video Clips --- Endo, Infertility, Chronic Pain, Pelvic Pain... ***PART TWO***
***PART ONE WAS ON JUNE 9, 2008***
### The video clip posted on June 9, 2008 on this blog can be viewed easily by clicking the title of this post. That will route you to YouTube. This is an AMAZING video on chronic illness!!!
###
***THIS POST BELOW IS PART TWO***
Please view the comments listed under the June 9, 2008 post:
Jeanne's Endo Blog: YouTube Video Clips --- Endo, Infertility, Chronic Pain, Pelvic Pain...
The woman behind the hauntingly beautiful video clip that cycles through and displays on this blog daily posted a comment today. The clip is about chronic illness. I'm sure just about anyone reading this blog will find her clip amazing!
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
### The video clip posted on June 9, 2008 on this blog can be viewed easily by clicking the title of this post. That will route you to YouTube. This is an AMAZING video on chronic illness!!!
###
***THIS POST BELOW IS PART TWO***
Please view the comments listed under the June 9, 2008 post:
Jeanne's Endo Blog: YouTube Video Clips --- Endo, Infertility, Chronic Pain, Pelvic Pain...
The woman behind the hauntingly beautiful video clip that cycles through and displays on this blog daily posted a comment today. The clip is about chronic illness. I'm sure just about anyone reading this blog will find her clip amazing!
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
7/10/2008
ENDO SURVIVOR! Our Very First Guest Blogger With A Message Of Hope and Determination - Elaine's "Endo Story"!!!
Editor's Note: Elaine refers several times in her article to BCPs. This is short for the birth control pills that she took to treat her endometriosis. As always, PLEASE refer to the disclaimer at the top of this endo blog's homepage. This blog does NOT dispense medical advice. This is one woman's story of her endo journey. Elaine is a former (volunteer) endometriosis support group leader.
Today's First Ever "Jeanne's Endo Blog" Guest Blogger is Elaine:
"Endo Story": I Am An Endo Survivor by Elaine
I am writing this to those at various stages of diagnosis and/or treatment of endometriosis, not because I have any answers, but because my story shows that there is sometimes a rainbow following the rain.
I am an endo survivor.
I am 46-years-old as I write this. I am told by my gynecologist that I am officially in peri-menopause. My understanding is that this is the stage women practice to go through “real” menopause. After the suffering I have been through I am ready to embrace menopause with open arms.
Every 25 – 30 days, I begin to watch for my period. I have the same feelings as every “normal” woman out there doing the same, or at least I think I do. Finally do, as the case may be, as this wasn’t always the way it was. My anticipation of my period wasn’t always just dreading the inconvenience, the occasional cramps, and the tiredness that I get now. Also, unlike a woman who might take these feelings for granted, I rejoice now that I am able to feel “normal” dread and the not the previous dread that I used to feel.
I was late bloomer. I didn’t start getting my period until I was fourteen-years-old. I remember wishing it would start, feeling left out of conversations with peers who knew the experience first hand. Whoever said “be careful what you wish for” knew the truth. My first period came with cramps. By my third period, I had diarrhea, nausea, cramps, mood swings, and a heavy flow. Did I mention cramps? Later, I would add bloating; lower back aches, vomiting, and breast tenderness.
Unlike many women with endometriosis who have a hard time being diagnosed, I did not. I was self diagnosed immediately. I had text book symptoms and a sister who paved the way. My mom suggested a visit to the same MD that performed my sister’s laparoscopy, but as a young teen, I was terrified of the pelvic exam. I was also determined to avoid a two-day hospital stay and surgery! I preferred to suffer. Besides there were some months that weren’t actually that bad.
Once when I was in High School, I fainted during an attack of cramps. The nurse told me I had to see an MD or I wouldn’t be allowed back on her couch in following months. I stayed home from then on when I knew that cramps were going to interfere with learning.
When I entered college and got my first job, missing days became more of a challenge.
I saw the doctor who treated my sister. A diagnosis wasn’t difficult, as I mentioned I had text book symptoms. He prescribed Birth Control Pills (BCPs) and life became tolerable.
Unfortunately, BCP didn’t solve all of my symptoms and the doctor suggested a laparoscopy. The next few years began my doctor hopping years. I changed doctors each time they suggested surgery, which was usually after I got my first prescription for pills and returned due to symptoms. I took anti-nausea medications, and pain killers, and was eventually diagnosed with Irritable Bowel Syndrome (IBS).
I stayed on BCP, avoiding surgery until 1988. I was 27 years old and had suffered through over 150 periods. However, after all my doctor hopping, I chose to put my trust in the wrong doctor. I chose an MD with no training in laser surgery. She had a partner who was suppose to assist, but at the last moment, he left to deliver a baby. I ended up having a diagnostic laparoscopy only that confirmed what the MD had been telling me all along, but I now had a few grainy Polaroid ® photos to prove it.
During my post surgery visit with my MD, I questioned medications popular at that time for treating endo and the connection with suicidal thoughts. My questions appeared to influence her decision not to have me take medication other than to continue with BCP. Basically, I had the surgery for nothing.
Well, I guess two good things came from having the surgery:
One, I joined the Endometriosis Association and that lead to me meeting wonderful people who offered support and advice through a local support group.
And, future MDs that I met didn’t jump in right away wanting me to have surgeries. Although, at least one pressured me to let him do a surgery just to be sure the diagnosis was correct. I only went to him once, but soon after I found an MD willing to change my BCP prescription to help when the symptoms returned, grew worse, and or side effects were bothersome.
I changed BCP over 20 times during the 23 years I was on them. Some I took only 3 months, some I used for years. Some I revisited after being away for a while and found they worked better than before. A wonderful doctor even battled my insurance at one point to get them to pay for a brand that they had moved off the drug formulary to encourage the use of generics.
A woman attending the support group almost had me convinced that I needed to have routine laparoscopies to know what was going on. She supported the concept that the BCP masked symptoms while allowing the endo to continue to grow while I naively went about life. I had so many fears at that time about my future, and many unanswered questions. I worried about scarring from surgery as much as I worried about scarring from the endo growths. I worried about my future. I could only qualify for disability insurance with endometriosis as an exclusion, so I worried about becoming unable to work.
I never did have a second surgery. I began taking Phenobarbital for bowel cramps and IBS.
It was during this time that I discovered that hormones affect bowel cramping. I felt a new understanding of why the pain meds didn’t help my menstrual cramps – they were bowel cramps. It is easy to confuse the two.
Eventually I went off the Phenobarbital with the help of an MD who suggested over the counter GasX to control cramps, limiting fatty foods, and increasing fiber. It was also around this time that I started eating yogurt. These days ads on television tout yogurt with active cultures as a cure for bowel issues, but back then, I made the link when I began feeling better with yogurt.
I also added calcium pills, multivitamins, fish oil, and exercise to my life. I found yoga helped strengthen my back muscles and reduced the lower back pain. Earlier, I had been told by a physical therapist that there was nothing they could do to help the endo induced pain. So I credit the yoga and yogurt for that help.
In 2004, I was advised to stop taking BCP during a time when I was trying to have heart symptoms evaluated. I had planned (with my MDs encouragement) to take BCP right through to menopause.
This new development really caught me off guard. BCP were a necessity in my eyes. I couldn’t go without them.
Well, I now know that I can! I feel normal for the first time in my life. I dread the idea of hot flashes in my future, dry skin, mood changes, etc, but I love the idea that I can join in conversations with peers for the first time in my life and feel “normal”. (Although I may tire of that quickly once I have a hot flash).
I have to admit after so many years on BCP, I had stopped having periods and had gotten used to this. It was kind of tricky to get back into the habit of counting days and planning on a period each month. But, I am pleasantly surprised to find that although I have cramps, they are nothing like what I had before, and that my periods are more regular than before.
I don’t know what truly helped my endo. The 23 years on BCP? Yogurt controlling my IBS symptoms? Exercise (relaxing with yoga)?
I just know that for the first time in my life I feel good.
My wish is for all women with endometriosis to reach this point.
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com. The "endo story" above was written in its entirety by Elaine (an endometriosis patient and former endometriosis support group leader).
Today's First Ever "Jeanne's Endo Blog" Guest Blogger is Elaine:
"Endo Story": I Am An Endo Survivor by Elaine
I am writing this to those at various stages of diagnosis and/or treatment of endometriosis, not because I have any answers, but because my story shows that there is sometimes a rainbow following the rain.
I am an endo survivor.
I am 46-years-old as I write this. I am told by my gynecologist that I am officially in peri-menopause. My understanding is that this is the stage women practice to go through “real” menopause. After the suffering I have been through I am ready to embrace menopause with open arms.
Every 25 – 30 days, I begin to watch for my period. I have the same feelings as every “normal” woman out there doing the same, or at least I think I do. Finally do, as the case may be, as this wasn’t always the way it was. My anticipation of my period wasn’t always just dreading the inconvenience, the occasional cramps, and the tiredness that I get now. Also, unlike a woman who might take these feelings for granted, I rejoice now that I am able to feel “normal” dread and the not the previous dread that I used to feel.
I was late bloomer. I didn’t start getting my period until I was fourteen-years-old. I remember wishing it would start, feeling left out of conversations with peers who knew the experience first hand. Whoever said “be careful what you wish for” knew the truth. My first period came with cramps. By my third period, I had diarrhea, nausea, cramps, mood swings, and a heavy flow. Did I mention cramps? Later, I would add bloating; lower back aches, vomiting, and breast tenderness.
Unlike many women with endometriosis who have a hard time being diagnosed, I did not. I was self diagnosed immediately. I had text book symptoms and a sister who paved the way. My mom suggested a visit to the same MD that performed my sister’s laparoscopy, but as a young teen, I was terrified of the pelvic exam. I was also determined to avoid a two-day hospital stay and surgery! I preferred to suffer. Besides there were some months that weren’t actually that bad.
Once when I was in High School, I fainted during an attack of cramps. The nurse told me I had to see an MD or I wouldn’t be allowed back on her couch in following months. I stayed home from then on when I knew that cramps were going to interfere with learning.
When I entered college and got my first job, missing days became more of a challenge.
I saw the doctor who treated my sister. A diagnosis wasn’t difficult, as I mentioned I had text book symptoms. He prescribed Birth Control Pills (BCPs) and life became tolerable.
Unfortunately, BCP didn’t solve all of my symptoms and the doctor suggested a laparoscopy. The next few years began my doctor hopping years. I changed doctors each time they suggested surgery, which was usually after I got my first prescription for pills and returned due to symptoms. I took anti-nausea medications, and pain killers, and was eventually diagnosed with Irritable Bowel Syndrome (IBS).
I stayed on BCP, avoiding surgery until 1988. I was 27 years old and had suffered through over 150 periods. However, after all my doctor hopping, I chose to put my trust in the wrong doctor. I chose an MD with no training in laser surgery. She had a partner who was suppose to assist, but at the last moment, he left to deliver a baby. I ended up having a diagnostic laparoscopy only that confirmed what the MD had been telling me all along, but I now had a few grainy Polaroid ® photos to prove it.
During my post surgery visit with my MD, I questioned medications popular at that time for treating endo and the connection with suicidal thoughts. My questions appeared to influence her decision not to have me take medication other than to continue with BCP. Basically, I had the surgery for nothing.
Well, I guess two good things came from having the surgery:
One, I joined the Endometriosis Association and that lead to me meeting wonderful people who offered support and advice through a local support group.
And, future MDs that I met didn’t jump in right away wanting me to have surgeries. Although, at least one pressured me to let him do a surgery just to be sure the diagnosis was correct. I only went to him once, but soon after I found an MD willing to change my BCP prescription to help when the symptoms returned, grew worse, and or side effects were bothersome.
I changed BCP over 20 times during the 23 years I was on them. Some I took only 3 months, some I used for years. Some I revisited after being away for a while and found they worked better than before. A wonderful doctor even battled my insurance at one point to get them to pay for a brand that they had moved off the drug formulary to encourage the use of generics.
A woman attending the support group almost had me convinced that I needed to have routine laparoscopies to know what was going on. She supported the concept that the BCP masked symptoms while allowing the endo to continue to grow while I naively went about life. I had so many fears at that time about my future, and many unanswered questions. I worried about scarring from surgery as much as I worried about scarring from the endo growths. I worried about my future. I could only qualify for disability insurance with endometriosis as an exclusion, so I worried about becoming unable to work.
I never did have a second surgery. I began taking Phenobarbital for bowel cramps and IBS.
It was during this time that I discovered that hormones affect bowel cramping. I felt a new understanding of why the pain meds didn’t help my menstrual cramps – they were bowel cramps. It is easy to confuse the two.
Eventually I went off the Phenobarbital with the help of an MD who suggested over the counter GasX to control cramps, limiting fatty foods, and increasing fiber. It was also around this time that I started eating yogurt. These days ads on television tout yogurt with active cultures as a cure for bowel issues, but back then, I made the link when I began feeling better with yogurt.
I also added calcium pills, multivitamins, fish oil, and exercise to my life. I found yoga helped strengthen my back muscles and reduced the lower back pain. Earlier, I had been told by a physical therapist that there was nothing they could do to help the endo induced pain. So I credit the yoga and yogurt for that help.
In 2004, I was advised to stop taking BCP during a time when I was trying to have heart symptoms evaluated. I had planned (with my MDs encouragement) to take BCP right through to menopause.
This new development really caught me off guard. BCP were a necessity in my eyes. I couldn’t go without them.
Well, I now know that I can! I feel normal for the first time in my life. I dread the idea of hot flashes in my future, dry skin, mood changes, etc, but I love the idea that I can join in conversations with peers for the first time in my life and feel “normal”. (Although I may tire of that quickly once I have a hot flash).
I have to admit after so many years on BCP, I had stopped having periods and had gotten used to this. It was kind of tricky to get back into the habit of counting days and planning on a period each month. But, I am pleasantly surprised to find that although I have cramps, they are nothing like what I had before, and that my periods are more regular than before.
I don’t know what truly helped my endo. The 23 years on BCP? Yogurt controlling my IBS symptoms? Exercise (relaxing with yoga)?
I just know that for the first time in my life I feel good.
My wish is for all women with endometriosis to reach this point.
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com. The "endo story" above was written in its entirety by Elaine (an endometriosis patient and former endometriosis support group leader).
7/08/2008
Gratitude Moment --- Crisis Averted: Test Came Back Normal On the Second Try!
Some of you are aware that I had an abnormal test recently that looks for a rare cancer called a pheochromocytoma. Due to the numbers coming up high, I had to do a second test and was nervous, to say the least.
I have had several "cancer scares" over the years and I had a "surprise" carcinoid tumor removed in 1996 during my (planned) combined surgery to remove endo and a foot of my colon. (Back then I had a hemicolectomy, entire appendix with the carcinoid tumor removed, endo removed... the works... during a laparotomy. I have also had 6 laparoscopies). If I had had a pheo, the surgery used to remove it is either a laparoscopy or laparotomy. I personally have no desire for an 8th abdominal surgery!
I was supposed to get the results of my 2ND 24-hour urine test last Thursday but they weren't ready then. This just increased my anxiety over it. I just spoke with the nurse at my primary care physician's office and the 2ND test was normal. Yay! I'm so relieved!
A pheochromocytoma is a tumor on the adrenal glands (which sit on the kidneys). So the PCP thinks the reason behind my first (abnormally high) test was the extraordinary level of stress I have been under. After all, my adrenaline has been getting a workout lately.
Thank you to everyone who sent me positive energy, prayed, listened, etc.!! Your support and kind words have helped me more than you know.
I have yet another reason to be grateful today! :)
P.S. THANK YOU to all who emailed me with their support! I really appreciate it!
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
I have had several "cancer scares" over the years and I had a "surprise" carcinoid tumor removed in 1996 during my (planned) combined surgery to remove endo and a foot of my colon. (Back then I had a hemicolectomy, entire appendix with the carcinoid tumor removed, endo removed... the works... during a laparotomy. I have also had 6 laparoscopies). If I had had a pheo, the surgery used to remove it is either a laparoscopy or laparotomy. I personally have no desire for an 8th abdominal surgery!
I was supposed to get the results of my 2ND 24-hour urine test last Thursday but they weren't ready then. This just increased my anxiety over it. I just spoke with the nurse at my primary care physician's office and the 2ND test was normal. Yay! I'm so relieved!
A pheochromocytoma is a tumor on the adrenal glands (which sit on the kidneys). So the PCP thinks the reason behind my first (abnormally high) test was the extraordinary level of stress I have been under. After all, my adrenaline has been getting a workout lately.
Thank you to everyone who sent me positive energy, prayed, listened, etc.!! Your support and kind words have helped me more than you know.
I have yet another reason to be grateful today! :)
P.S. THANK YOU to all who emailed me with their support! I really appreciate it!
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
6/09/2008
YouTube Video Clips --- Endo, Infertility, Chronic Pain, Pelvic Pain...
You may have seen the YouTube clips to the right (see the "YouTube Slideshow. Random Videos will Cycle Through. Not responsible for content!" arrow).
I really found the "Hyperfluorescent Endometriosis" clip - a demonstration of the hyperfluorescent endometriosis with autofluorescent laparoscopy from Steven F. Palter, MD's prize winning video - intriguing. I had never heard of this method of visualizing small endometriosis implants that are not easily seen by the naked eye. Dr. Palter mentioned the use of a combination of illumination and observation filters.
There are clips on chronic pain and infertility as well. The clips will occasionally rotate to a new set. It takes a bit of time for it to rotate sets but the clips will switch on their own if you're patient. I tagged this search for YouTube videos on the topics of chronic pain, endometriosis, infertility, and pelvic pain. Please excuse any ads or inappropriate language that might dynamically rotate through. (I am not responsible for the content of the video clips). The tags I listed should hopefully get it narrowed down to some good videos.
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
EDITOR'S NOTE:
Here's a little postscript...
Please see a follow up to this post on JULY 14, 2008
Jeanne's Endo Blog: YouTube Video Clips --- Endo, Infertility, Chronic Pain, Pelvic Pain... ***PART TWO***
I really found the "Hyperfluorescent Endometriosis" clip - a demonstration of the hyperfluorescent endometriosis with autofluorescent laparoscopy from Steven F. Palter, MD's prize winning video - intriguing. I had never heard of this method of visualizing small endometriosis implants that are not easily seen by the naked eye. Dr. Palter mentioned the use of a combination of illumination and observation filters.
There are clips on chronic pain and infertility as well. The clips will occasionally rotate to a new set. It takes a bit of time for it to rotate sets but the clips will switch on their own if you're patient. I tagged this search for YouTube videos on the topics of chronic pain, endometriosis, infertility, and pelvic pain. Please excuse any ads or inappropriate language that might dynamically rotate through. (I am not responsible for the content of the video clips). The tags I listed should hopefully get it narrowed down to some good videos.
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
EDITOR'S NOTE:
Here's a little postscript...
Please see a follow up to this post on JULY 14, 2008
Jeanne's Endo Blog: YouTube Video Clips --- Endo, Infertility, Chronic Pain, Pelvic Pain... ***PART TWO***
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