Unsure what's next.

[rhiwales]

Hi everyone I just need some advice or reassurance that I'm not the only one in this kind of pickle.

I started suffering pain after a cyst burst on my ovary. It took a few months to find it. Since then 3 years ago I've been in agony. I've had a laposcopy because they thought I might have endo but nothing found. Although I did feel better after being on prostap. Now I'm off prostap I'm back to square one. They find what's wrong and im getting awful pain in pelvis and bottom. It's so painful it's impacted on what I can or can't do. They've said they will refer me to a pain team and that doesn't work maybe I will need a hysterectomy.

[PPSN_JudyB Pelvic Pain Support Netwo]

This could still be endometriosis even though nothing was seen especially as prostap helped. There are other meds if you're willing to try. I would discuss with the pain team. Good luck, let us know how you get on

[pauline19]

I will share with you what happened to me in 1990. I was 4 months post partum and on major narcotics for the "mystery" pelvic pain. The same OB who had delivered my son did the lap and I was conscious, watching the video screen (I still have that VHS tape). Nothing found. Nothing.

Son was weaned from the breast BC of the narcotics. Pain worsened. I finally went to 5 more gynecologists for opinions. My husband said that during intercourse he "felt like he was hitting something." Doctors dismissed this out of hand. One sneered while I was in the stirrups that he "could teach anatomy by the position of my organs." I will remember that to my dying day. Eventually at home I reached in and sure enough my cervix was almost to my vaginal opening, but ONLY when standing. But it wasn't the source of the pain.

At the last doctor the nurse put me in the gown and in came the MD. He said "I can't exam you standing up, lady." Me: "Yes you will." I lifted the gown and spread my feet.

"Do you see now?" My cervix was actually hanging out. He said, "Well this is a new one for me. Get dressed."

In his office I handed him my copy of the video. I told him that as dramatically bad that prolapse was, it wasn't the main problem. The PAIN, sir is killing me. He asked me how badly did I want more children? "Badly, I want more. But obviously this is not a realistic prospect."

Remember, this was before ultrasound, MRIs, CTs. He told me that my prolapse was so severe that repair was not going to be successful. I needed to accept that I was lucky to have had my two sons and leave it at that. He was going to have to do exploratory surgery which would almost certainly end in a total abdominal hysterectomy.

I went home, cried for days, then scheduled the surgery a month out. My mother in law was horrified, laid guilt on me, my husband said I was "damaged goods." (Yeah, we're divorced)

After the surgery, I was told that my obstetrician should've looked BEHIND my uterus. There was a large tumor, nonvascular, and he had had to use a saw to get it out taking intestine, and other surrounding tissue and that both ovaries were covered with cysts. My other doctor had put me on the Pill and sent me packing. In the surgeon's opinion, those few months on the birth control pill had only fed my ovaries with too much estrogen etc and now all I had was a piece of ovary less than .25 cm big to provide me with my hormones! Every other bit of my female organs were gone. I was barely 30. I should've sued my OB for not looking at the back of my uterus six months previous, and for thinking the Pill was a panacea for all "female trouble." Even now, 25+ years later I'm grieving. The severity of the prolapse should've been a red flag. I have Ehlers-Danlos Syndrome, but only got diagnosed two years ago. Pelvic organ prolapse is a sign of it.

Now with pudendal neuralgia so severe that the GP put me on opium suppositories last week for the pain, my second husband can't even touch me without the arousal making the pain worse (mine is vaginal, vulvar, rectum, clitoris, thighs) we haven't even hugged in two years.

I found out that there's something (here in the States at least) called NaPro which is a different school of thought in gynecology. Instead of "papering over" a woman's problem with the Pill (I once yelled at a gynecologist, "is the Pill all they taught you in medical school?") NaPro tries to actually diagnose and TREAT the problem whatever it is, and save her fertility instead of just taking it away.

Pelvic pain is so complicated--labral tears of the hips, nerve entrapment, endometriosis, cysts, sloppy surgery, poor childbirth care, etc etc. It's endless. But all we can do is educate ourselves and more importantly, OTHER WOMEN. WARN THEM.

Women are told the Pill fixes everything, but tricking your body into behaving as if you're pregnant for years is NOT WITHOUT CONSEQUENCES. That's my takeaway. It only DELAYS diagnosis. It's EASY for the doctor, but awful for you in the long run. My cardiologist told me he put a whole house reverse osmosis water system in. Why? His wife and four daughters. He says the estrogen metabolites in the water supply are causing breast and genital cancers! And that's just the WATER! His young daughters aren't on the Pill! But if they drink our metropolitan water they might as well be!

Sorry to have written a book here, but I think women need to know these problems are multifactorial, as most medical conditions are.

My heart goes out to you, and all in this group. So few doctors *get it*. Most would "eat a gun" if they had to endure what we do every day. Just remember that there are paths out of this, and it starts with you.

Please try to get "A Headache In The Pelvis" on eBay, amazon or somewhere. Answers for YOU are in that book.

We are with you! Hugs, Pauline