Please help a new member

[WillowsWay76]

Ok I am a 43 yo woman with 2 kids. Both were over 9lbs. One is almost 23, one is 9. I have been dealing with a host of issues since 2004. Prior to that one heartburn pill that was it.

I have pcos. Not long after having my second child I began feeling as though someone were standing behind me with their arms wrapped around to the front and pull back on my ovary/hip area. At first it was very gentle and mostly when I was sitting in the vehicle. Over a short period of time it really picked up pressure and pain. I started a long journey for answers. Basically docs thought I was crazy and so I would go to a new doc. I tried every treatment imaginable. I finally got a referral to a pelvic pain specialist when I was on TWO birth control pills and still hemorrhaging. That specialist did an exploratory lap in 2013. She found pelvic congestion syndrome (which I had never heard of nor did this doc even treat), and IC. Along with adhesions from my Csection with my son... it was pretty brutal as he didn’t want to give up... lol. The pain continued although my urine symptoms got somewhat better with Elmiron. I went for a second opinion, not willing to accept that I had to be snowed by meds or in pain. The consulting gyn did not even do an exam. He looked at what I had sent him and told him and said that he was sure that I had adenomyosis and that I needed to ask the pelvic pain specialist for an MRI to confirm. So I call the office, they check with doc... the response? I know you have it but I am not changing my treatment! So I proceeded to my pcp’s office to beg for an MRI. This led to her fighting with my gyn office and between the two it was ordered. I finally got it and was told by my gyn office that everything was fine just like they suspected. I took the report and cd and made an appt with another gyn for a consult. He read the report and said that I needed a hysterectomy for adenomyosis! I was horrified... I asked how did he know I have it. He said the report is very clear and didn’t my gyn tell me about it. He was shocked when I said they told me it was a normal scan. He said not only is it blatantly obvious for adenomyosis but you have cysts on your ovaries! So I had a hysterectomy with ovary conservation. I still had bladder, bowel and back issues but the pelvic pain was gone. Until aug of 2019 when it came back with a vengeance. I am at the point where I am ready to demand disability because I cannot function for full day without spending my lunches in my car lying down. The only way I get any relief is by lying down. I have, to date, MRIs, ct venogram, at my insistence I just underwent a classic venogram via the jugular. They did not want to do it, but I was persistent and provided proof where I had been diagnosed previously! I am so disheartened and defeated that they say they found nothing. My next move is another exploratory lap on March 16th if I can last that long. I am really ready to just give up.

Any help, thoughts, suggestions would be helpful!

Thank you so much! And I apologize for the length of this post

[kalecolbe12]

What a journey you've been on!! as we all go on these journeys for this kind of issue....I personally think it sounds like the general heading of pelvic floor dysfunction which can be many things.... So my question is have you been to a pelvic floor physical therapist for a complete assessment? Since I have been helped so much by my pelvic floor PT I always tell people to go there because they really are the only people that can tell you what's going on in my experience ...of course you do need the imaging like CT scan and MRI that you have had but it sounds like you're just going in circles now...it seems like doctors really don't know much about it there's so many nerves and muscles down in the pelvic floor... Please consider finding a pelvic floor PT to go see

[paine321]

Hi there

It is a very difficult situation the one you've been coping with for so many years.

Doctors wont have any answer, you ask them.

My advice based on my condition is to look for an orstheopath specialist in pelvic floor.

That professional can give you a diagnostic on what you're at and what you could do.

But must be a good one !!

Best of luck.

Paine321

[Skye22]

Have a look at CAPPS, chronic Abdominal pelvic pain syndrome. It is a term that covers a multitude of pelvic conditions that are all interrelated. When I read it everything started to make sense!!!

I have way too many conditions to write down but similar to you lots of tests and docs and going round in circles!!

Part of my conditions is due to having 13 surgeries (gynaecology) and has left me with severe adhesions on bladder, Bowel, pelvis and abdomen basically all fused together. Dysfunctional bladder and Bowel and levator ani syndrome.

I'm ruled out for any surgery, as risk of complications is very likely. All surgery causes scar tissue and adhesions so it's a fine line of benefits and risks.

Hope this helps and you can move on to a treatment that is right for you.

[Skye22]

Sent a message to paine321 that was meant for you hope it helps.

[Luckee]

Hi there, I’m very sorry to hear about all you are going through. While my problem was not as severe as yours, it was debilitating and I was unable to walk across the room without pain completely across my abdomen. I had all the tests and saw literally eight different doctors trying to figure it out. Not a single one was helpful. If it didn’t fall within their specific area they washed their hands of me and no one gave me guidance. Then a friend suggested seeing a pelvic physical therapist. Best thing that ever happened to me. Turns out the fascia in my abdomen was tangled up with scar tissue from a C-section 30 years ago. The therapy wasn’t the most pleasant experience I’ve had (she literally had to pull my abdominal skin like taffy to break up the fascia that was tangled with the scar tissue) but my therapist was fabulous and we laughed our way through it. I am happy to say that it has been a true blessing and I have not had pain since. Most of the doctors I spoke with afterwards never even thought of fascia!. Still trying to comprehend how this thought never crossed the mind of even my gynecologist. If you haven’t seen a pelvic therapist I heartily recommend it and do mention fascia to them. Wishing you all the best!

[tog12 in reply to Luckee]

Hi luckee it was interesting to read of your experiance. I have been trying to find a cause for my abdominal pain which started 5 years ago for no apperant reason. Various investigations operations have shown no result I am now under the pain clinic and feel there is no more hope, like willowsway76 the only relife is when I lie down.

[Stillsomehopes]

I am sorry to hear what you have been through. I have just been diagnosed and treated with Pelvic congestion syndrome and your symptoms sounds just like mine. The hardest part of this condition is Drs do not know about it. Get the right doctor would be something I would like to recommend.

Where do you base? Can you find experienced doctors (would be intervention radiologist) I can find out from the liturature also if you would like.

Lastly, please tell yourself that you have done a great job during the hardest Condition so far. Be proud of yourself.