other problems from surgery, adhesions?? - ladies please help me

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Xx Claire xX
Regular Member


Date Joined Mar 2005
Total Posts : 94
   Posted 2/11/2010 5:00 AM (GMT -7)   
im looking for some advice from any women who are expereinceing the same as me.
 
for 2 years i have been experiencing sexual problems with my boyfriend, i get burning stinging pain every time we have sex and its unbearable sometimes lasts for ages afterwards.
after many swabs and negative results as well as been cleared from having any STDS i finally got refferred to a gynacology late in 2009.
 
they are pretty sure its endometriosis caused by my extensive surgery i had 3 years ago. they suspect i have a lot of adhesions because i had a lot of bowel removed. they cant go in and have a look because they say it will be too dangerous and run the risk of perforating an adhesion etc.
 
so while its all guess work they want me to try a hormone injection every month that can help the pain by stopping my periods. if the estrogen isnt being produced the scar tissue should reduce or something like that
 
trouble is im very wary about starting this, they only want me on it a few months as it causes osteoporosis which ive had before, so surely when i stop it the pain will just come back again and my whole cycle will be messed up
 
i guess my main questions are has anyone been diagnosed with this problem as a result of surgery and how are you coping with it, any tips on how to reduce pain and get on with it, as a result i have no sex drive an depression which puts a huge strain onmy relationship, i am only 20
 
PLEASE HELP!!! :(
thankyou xxx
http://lifewithoutguts.blogspot.com/
my blog iv strted to right for my own peice of mind feel free to have a look and get in touch 4 a chat :)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/11/2010 1:21 PM (GMT -7)   
I suffer with alot of problems with adhesions. I never had problems like you describe, but my monthly sure was miserable. I was so miserable that by the time I was in my mid 30's and done having kids, I finally told them to take the stuff out. Now I know that its quite common for us to have rough monthlys.

I read this about this recently, but I am wondering if you allergic to his sperm? You might want to google that and see if it applies to you. Just a thought! Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 2/11/2010 1:51 PM (GMT -7)   
I think I would ask for a referral to an endometriosis specialist. Since you are so young you might want to preserve your chances of having children in the future. I, like Nanners, have had a lot of problems with adhesions. My periods got worse as time went on with a lot of cramping and heavy bleeding, not sure how much, if any of it, had to do with the adhesions. I ended up on Birth Control pills FOR my osteoporosis, and that helped my periods tremendously. (I had my tubes tied after I was done having my kids). I just stopped the B/C because I had an endometrial ablation done this fall for polyps and fibroids and that basically took care of my heavy bleeding and cramping. My osteoporosis is stable so we are letting it go for now and we will see what happens with that in a bit.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 2/11/2010 5:34 PM (GMT -7)   
Surgery doesn't cause endometriosis but it does cause adhesions. There are a few theories about the cause of endometriosis but no one knows for sure. The latest theories say it is something we are born with and something triggers it and makes it worse. Endo tissue has been found in the lungs, brain, nose, everywhere, not just in the pelvis.

Before you agree to any injections, please do some research. Is it Lupron? Lupron causes many side effects besides hot flashes and osteoporosis and some are permanent such as stroke, tooth loss, and chronic muscle pain. While some women find relief from their pain while on Lupron, many don't plus the pain usually returns after you stop the injections. These drugs can be dangerous, don't help as many women as is claimed, are expensive, and don't cure endo.

You can still have problems with endometriosis after a hysterectomy and pregnancy doesn't cure it either. Unfortunately right now, the best treatment is surgery performed by a specialist. You can learn more at the Endometriosis Research Center website - www.endocenter.org. The forum is not very active right now but you can still find a lot of great information.

I was diagnosed with endo about 6 years ago after surgery to remove an ovarian cyst. Since then I've learned a lot about it and it scares me how much misinformation is still out there, especially among doctors. My current doc does not use Lupron, he says why swap one problem for another. He used to use it but most of his patients still felt miserable even if it helped their pain. Plus, he said most of them ended up having surgery anyway so why use a toxic drug designed as a chemo drug for men with prostate cancer.

Good luck.

jesse's_girl
Regular Member


Date Joined Dec 2009
Total Posts : 70
   Posted 2/11/2010 5:44 PM (GMT -7)   
I have had endo since I was 15. I have been on most pain meds, sx, and alternative treatments. I found that although a lupron and sx mix helped for 3 years, and the continuous BC helps to keep every thing calm, that the best treatment that I have had and the longest lasting was a medication called Femara. I was told that it is a breast cancer med and that it works on a cellular level. I was on it for about a year and have been off of the pain meds since about 3 months into my treatment with it, that was 4 yrs ago...the longest I have gone since 15 with out sx. The entire time I was on Femara I had NO SYMPTOMS! the only problem that I had with the med was the cost. however the company that made the med has a finacial assistance program that you can see if you qualify for. (they were sending me my meds for free.)

Please if you have any other questions let me know...I may not understand my CD but I do understand my Endo.
Diagnosed Endometriosis 1998, Crohns 2008
Drugs: Pentasa, Entocort, B inj


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 2/11/2010 5:56 PM (GMT -7)   
Jesse's_girl - did you have any side effects from the Femara? I don't know anyone that's tried it so I am very curious. Have you been symptom free for four years now?

It looks like using Femara for endo is an off label use so it may be a problem to get insurance coverage. Did you have a difficult time getting into the financial assistance program because you were using it for endo instead of cancer?

jesse's_girl
Regular Member


Date Joined Dec 2009
Total Posts : 70
   Posted 2/11/2010 6:16 PM (GMT -7)   
I had No side effects. I was paying out of pocket for the med for about a year, until I found that they did have an assistance program. It was not hard to get into, I called them (got the number off the internet) explained my situation, had my Dr fill out paperwork and they would send it to me in the mail every month, you do have to keep up with the paperwork though.

I would say that I am symptom free for the most part, I occasionally have some pain during a P, But nothing like before and I do not need to take pain meds to get through. I occasionally still have some discomfort during sex but at least I can understand why people would actually have sex, i had no idea why anyone would have sex, before it was something that i endured because I was in a relationship, now I get it. I still have a hard time with the mental part of it (relaxing before and having an open relationship with Jesse so we can talk I can tell him that I need more time, softer, or just not tonight.) Just remember that you and your body are not just suffering physical pain but mental and emotional pain as well.

Come on ....these are easy questions.....lets see your curve ball questions..... lol ;)
Diagnosed Endometriosis 1998, Crohns 2008
Drugs: Pentasa, Entocort, B inj


jesse's_girl
Regular Member


Date Joined Dec 2009
Total Posts : 70
   Posted 2/11/2010 6:25 PM (GMT -7)   
Sorry, about the "easy questions" comment I do feel for all of you ladies that are having problems. I just finally felt like I had some answers for someone...as I have been dealing with lots of questions and no answers about my CD. So Please ask away and I will help give you the best answers that I can based on my personal experiences with Endo.
Diagnosed Endometriosis 1998, Crohns 2008
Drugs: Pentasa, Entocort, B inj

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