Just diagnosed after 10 years

In September I was diagnosed with Pelvic Floor Dysfunction after having chronic pelvic pain for 10 years. They recommended PT, but the eval was so painful that I didn't pursue it.

I have never had normal periods. I have gone one time a whole year with out having one. I have been on the pill which I can't take now because my BP spiked while on it and I got my first migraine. I tried the Mirena 2X. They had to take it out both times due to heavy bleeding and pain. And of course I have been on the cyclical progesterone route a ton of times. I can't tolerate it due to severe mood swings. I am at a very high risk of endometrial cancer due to my lack of ovulation and my weight which just stores and perpetuates estrogen!

I am having terrible symptoms now. My periods are getting heavier and painful with each one. I have severe knife like stabbing pain in my vagina and rectum all the time. I have severe pain and pressure in my vagina and rectum as well. The opening of my vagina is very sore. I cramp all the time like my period is going to start but it doesn't. I have severe right sided groin pain that is now going down the front and back of my leg. My bladder hurts and my urethra hurts. I have been diagnosed with vaginismus and vulvodynia and vulvar vestibulitis. I am a virgin. I am glad that I don't have a boyfriend because I don't think that we could even consumate our marriage if it got to that point right now. I don't even think foreplay would be possible.

I have had 2 dx laps to check for endo but they were both neg. I had a d&C and hysteroscopy and they found a small polyp.

I am currently in pelvic floor pt for the vagnismus. I can barely stand it - it hurts so bad. I am on percocet. A few docs have recommended hysto. Well a colorectal surgeon just did a pelvic MRI and found that I have adenomyosis. That explains a lot of my symptoms.

I talked with my urogyne last week about doing the hysto and she said that she would definitely recommend it if it would take away all my pain, but it won't due to all the pelvic floor issues. I am only 36 and have no kids.

My period started yesterday. For 5 hours b4 it started Sat. nite the pelvic floor pain was the worst it has ever been. The percocet didn't even touch it. This has been the most painful period I have ever had.

I have decided that I can't live this way until I go thru menopause. The only real "cure" for adenomyosis is hysterectomy. They say at menopause it goes away. But I can't live for 15+ years like this.

Am I crazy for deciding that I want to go through with the surgery? They are going to do a SIS to check for fibroids and if they do the hysto they will do it laproscopically to check for endo as well.

I called the doc today to tell her that I have to go thru with it. I know that it won't get rid of all my pain, but if it gets rid of some of it it will be worth it.

Any advice? Thanks - Kayleen

Hi - I am so sorry you have endured your pain for over 10 years. I don't think you are crazy for deciding to have the surgery. When your quality of life is suffering as much as yours appears to be, it's time to take action. I am 46 years old and suffered through years of female problems; heavy bleeding, adenomysis, polyps, medication etc., etc., etc. I TRIED to put up with my problems until I hit menopause, but last year my uterus prolapsed. I kind of felt like that was Gods way of deciding for me. Anyway, I hope the hysterectomy helps you feel better so you can enjoy your life again! Keep researching the information on this site and ask questions. You will learn a lot about your procedure and the recovery too. I under estimated the amount of time needed to recover; it is a slow process. I wish you all the best! Take Care

Kayleen,

I'm sorry that you're having to deal with pain issues...

I also lived with the pain for many years ignoring docs recommendations to have a hysterectomy for 20 of those years... until I had a total pelvic prolapse causing even more problems than the endo and adeno...

Not crazy for wanting to get rid of pain... quality of life issue...

No-one can advise you as to this decision and it sounds as if you have already made it...

Hoping that you find a successful outcome and a happier, less painful life with your decision....

Wishing you the best,
Kathy

I have endometriosis and adenomyosis... it's the adeno that caused most of my pain, though. Sweetie - you can't live in pain. You just can't.

I was in horrendous, 24/7 pain prior to my surgery... walked around with it (not as bad as yours, though) for years because doctors said nothing was wrong. They were wrong. A different doctor took me seriously, thank goodness.

After my da Vinci LAVH, I felt so much better that it's like I was given a new life. One of my coworkers, who also suffers from gyn issues & had a hyst, said, "You didn't know how debilitated you were, did you?" And she was right! It wasn't until the pain was gone that I saw how it had taken control of everything.

I don't think that there is a cure-all for the issues you're describing, but if you've got adeno and are in pain, considering a hysterectomy is NOT crazy. What's crazy is 10 more years of pain (if you don't mind me saying so, as someone else who's walked around in pain for years!).