Adenomyosis, endometriosis, PGAD, ? Hysterectomy

[Melanie9999]

Hi everyone, has anyone else got their PGAD along with endometriosis or adenomyosis and bladder symptoms? I have just found out that my endometriosis has spread even further and have had multiple failed surgeries. I know wonder if my bladder irriation and PGAD on sitting down is from the endometroisis pressure in my pelvis. I am being recommended bowel surgery and a hysterectomy but need to find someone that can do it. I am hoping to god that the endometriosis is the cause and that after a hysterectomy I will no longer have it, but I know that a hysterectomy can also cause pudendal neuralgia so I am worried. ONly thing is, I feel my pGAD is coming from inside my bladder or uterus so it would make sense to be endometriosis irritating the nerves (crossover). Perhaps if the uterus is taken out then the pain might go away. I am scared, I am high risk of a colostomy bag. I am so confused and also struggling to work and want to leave work (I lock myself in my office everyday and I have a standing desk which kills my legs and back). I want to know how much will I have to live on with disability benefits in the UK? I really want to know will they help with my mortgage? I feel like I am going to lose my house, it is bad enough I have lost my health. Anyone found any good cusions? Any good office chairs so I can sit down sometimes? Nothing helps me at all and I have terrible insomnia too, I still have the irritation at night if my legs touch, I feel my pelvis is compressed and then teh pain starts. I have to lie on my back which gives me backache just to relieve the PGAD and I am wrecking my back. I have a spinal stenosis already but the PGAD and constant urination is the worse thing so I hurt myself to releif that. Please any advice would be helpful

[stephanies]

Melanie,

Have you had surgery to remove endometriosis before and has it helped with your pain? Have you tried Lupron injections to see if this helps? I have been told that I have severe endometriosis (based on MRI, including a large amount at the rectum) but I have no typical endo symptoms, just this PN stuff. I am too fearful of more surgery to do anything right now. If you do decide to go the hysterectomy route you can see if you can find a doctor who is PN aware (to hopefully keep any nerve damage from occurring) and I think you can also have your uterus not removed vaginally, but laparoscopically through the incision.

My best to you,
Stephanies

[kathyd]

Hi Stephanie S.
Hope you are feeling well.
You mentioned having Endometriosis. ..and that it was found by MRI.

My pelvic pain gyn, in the NYC area, sent me to several specialists from 2008 -2012, trying to cover all the bases. Each led us basically nowhere.
I was even sent to an Endometriosis specialist, tho I had No signs of it on my MRI. He examined me, etc. said I did not have it and sent me on my way.
However my sister has had Endometriosis; It made it hard for her to conceive, tho she finally had twins back in 1994 via In-Vitro fertilization.
She does not have any pelvic pain or urinary issues.

BTW a few years before my pain issues began, my local obgyn at the time, noted some Adenomyosis, but assured me it was minor and nothing to worry about. I had never heard of it back then. I believe it's uterine tissue that grows outside the uterus or something of that nature.. have to research that.

Just wondered what type of rectal pain you have, and where it's located etc. and if it's similar to mine. (constant throbbing, aching, right at anal opening and in the area just outside opening. (if you wouldn't mind saying).
(Tho I doubt it my case) i now wonder about the adenenomyosis! I have tended to over-think things and over-research things in my desire to get better, and there are other factors that are morelikely the culprit in my pain.

Wishing you good health!
Thx,
Kathy

[stephanies]

Hi Kathy,

I tend to overthink things too. My pain is left sided. I have some skin sensitivity in the anal area on that side. The same brush of something against the skin feels very different on my left (very painful) than my right. The worst spot (where the pain seems to originate) is about an inch from the rectal area on my left buttock. I am sure there is some sensitivity inside. Any pressure on the area, even if it is slight, can increase the pain tremendously. When I pull my knees to my chest while lying down I feel a tug on that spot and an increase in pain there and in the perenium. I asked my pain dr about the endometriosis when I saw here a few weeks ago and she said she doubts it is contributing to my pain since I have no typical symptoms of endometriosis. In addition, I had 5 virtually pain free years after my first bout with PN pain which I am not sure makes sense if endometriosis is the culprit. I am sure I could find a doctor who would do a Lupron injection, but that can give a lot of side effects as well. I have a lipoma near (but not quite on) the area of worst pain. My pain dr doesn't think it is causing the pain, but she set me up to see a colorectal dr next month for his opinion.

Hoping for less pain for you,
Stephanies

[Lernica]

Melanie,

For what it's worth, I too was diagnosed with endometriosis (stage IV - extensive). I took Lupron injections for nine months and then had a hysterectomy. Neither had any effect whatsoever in reducing my PN pain.

Best wishes,
Lernica