Desperate for help with chronic pelvic pain

[gardensandgin]

Hi all,

I was diagnosed with stage 4 endometriosis in 2014, and quickly had a laparoscopy to remove large cyst on right ovary and lots of adhesions. Less than a year later, the cyst had grown back and I had a second laparoscopy. I was immediately given injections to induce the menopause after last lap to minimise recurrence risk. However, from about 3 weeks post-op I started having terrible pelvic pain when having a bowel movement, intercourse/orgasm or doing any kind of high-impact exercise like running or fitness classes. I also get a throbbing/aching feeling in my genitals/rectum with arousal. I assumed the symptoms were linked to healing process so I waited for it to settle down but when 3 months later it was still the same, I saw my gynaecologist again. He said it would be nothing to do with endo as I was in the menopause and had just had everything excised, so he referred me to gasteroenterologist. They did blood tests, stool samples but said everything looked normal so they just told me to basically grin and bear it and try not to get constipated (which makes pain worse) - she said she suspected I have IBS. The pain isn't constant but it's very regular and tends to be episodic. It often means I have to put my feet up for days at a time when it's bad. Pain killers seem to have no effect. I've also recently developed some lower back pain but I don't know if this is linked. I've found a pelvic pain specialist Dr Baranowski who I am seeing in March but I am desperate for answers and have now waited over a year to try and figure out what is going on. It's completely ruining my relationship and my self-esteem. I feel like no one believes me/is taking me seriously. Has anyone else experienced anything similar? I'm desperate for some advice.

[Charlie-36]

Hi I too developed chronic pelvic pain after a lap for endometriosis where they removed a cyst from left ovary and adhesions all left side. Mine also started roughly 2 - 3 weeks following the surgery. My pain started off being around my periods and then with sex/ or just orgasm and then with anything that would require straining or any sort of physical exertion which could just be lifting something a little heavy so very sensitive. Standing for longer than 10 mins was also a big trigger and walking. Like you said I would literally have to spend a day or 2 just lying down with hot water bottle to relieve this intense pain, and painkillers comp useless. I spent 2 years seeing various professionals but getting knowhere. In the last year I've been seeing a women's physio therapist as it's looking like my pelvic floor is too tight which can cause intense pain and all sorts of symptoms. I still don't know why this happened after my surgery. I've made some improvement physically in the last 6 months which i never thought would happen, I just wish someone had known sooner and maybe it wouldn't of got so bad.. It's difficult as hormones seem to really kick things off for me so my consultant things there's gyne / endo problems too..I hope this of some help I know how stressful it is and how life changing it is.. good luck

[gardensandgin in reply to Charlie-36]

Thanks for your reply Charlie and I'm sorry to hear you have the same pain. It sounds like we have had a very similar experience. In the research I've done, pelvic floor dysfunction seems the most plausible option, although I am also concerned about nerve damage. Have you found the physio sessions to be helpful? Has the physio been able to give you a prognosis for improvement? Thanks again

[Theotis]

I identify with almost everybody posting on this site. This excruciating pelvic pain that doctors just deny and roll their eyes at. But there are doctors and centers that DO get it. I've just recently realized that fact and I'm determined to find those angels of mercy.

This is a very baffling condition to diagnose and to treat. I've been on narcotics for over four years and was just introduced to Lyrica. It is a Godsend. But why did I have to wait four years ? It is enraging to be completely invalidated and abandoned by the medical community. I really feel for you.

Lyrica was immediately effective for my pain but there was an initial period of being completely drowned by it......sleep sleep sleep, and then, suddenly I emerged, a new person. I tried to take amyltriptoline and nortryptoline early on but the side effects for me were devastating. These drugs are different for everyone.

Find professionals who are interested in and know something about your very real pain.

[bridget55]

Hi,

I'm so sorry you are going through this. I can really sympathise - I had my left ovary and tube removed via laparotomy in 2004 but something went horribly wrong after the surgery and I ended up with peritonitis and a pelvic abscess. That was the start of over a decade of surgery trying to divide adhesions and scar tissue and put everything back where it belongs. I don't know what to advise - I had a lot of surgery, but ultimately nothing helped. I have days when the pain is so bad I can only take shallow breaths.

I am sure a specialist pain clinic could help you. It certainly helped me.

One of the biggest issues I have encountered is ignorance, tbh. I was due to return to work after having a salpingo-oophorectomy, pelvic abscess, peritonitis and septicaemia, well over a month in hospital and the horrible experience of my husband being advised I might not make it, and the Occupational Health doctor opened with "So I understand you have been having trouble with your periods......"

I could have cheerfully throttled him.

The only thing I can usefully offer is to listen to your instinct. If it's telling you to lie down, then lie down. If it's telling you to walk about, then do that. I found that using strong opiates in conjunction with docusate sodium for constipation worked well for me