Persistent pelvic pain - please help

[XYZ9]

Hi everyone, I am looking for some advice and I’m hoping you can help.

For the last 23 months I have had pelvic pain and have no diagnosis. I have had internal ultrasounds (showed two small polyps and what they described as functional cysts), an external ultrasound, an abdominal CT and when none of that showed anything, an investigative laparoscopy and hysteroscopy. In the laparoscopy they discovered “more than typical pelvic adhesions” connecting my left ovary and bowel which they removed, and a minimal amount of endometriosis which they also removed (not enough to cause symptoms). The hysteroscopy removed the polyps which I think has resolved some of my bleeding issues. The internal images also showed the veins behind my uterus as being “more than typical” so the presumed diagnosis was that the scar tissue and enlarged veins caused the pain - likely the “difficult to diagnose” pelvic congestion syndrome. 6 months on from surgery I can confirm my pelvic pain has not disappeared - my surgeon thought the scar tissue was congenital (so to me it would have been strange for that to have started causing pain in my early 30s) and I don’t think I have pelvic congestion syndrome - whilst some of my symptoms fit, a key indicator, ie it disappearing when lying down/elevating, does not ring true as I am sometimes woken up in the night with it. I have spent hours and hours online searching and cannot find anything that I think fits my symptoms. I have pain, that started in one specific place on the left side at the top of my pelvis, but is now on the right as well as centrally (not always all of these) sometimes I feel the pain in my back, or higher towards my lower abdomen, but primarily in my pelvis. It can occur when I’m standing, sitting, lying, exercising, having sex (basically any time) and occurs throughout the day, every day on and off. I have tracked symptoms for months and my symptoms don’t seem linked to my cycle, if anything they’re better around period when period pains take over. I have used lots of different terms for the pain including sharp, intense, throbbing, aching, stabbing, sore and heaviness. At this point I’m not sure what to do, I feel like it could be worsening, but I’ve effectively been signed off without knowing what’s causing it.

Any suggestions would be greatly appreciated, thank you.

[bantam12]

Sometimes they can't find a cause, I've had pelvic pain for over 20 years, every test available many times over and spent £1000s on private Drs but still no idea why. My present Gynae has agreed to do a hysterectomy but no guarantee it will help and that's my last option, if it doesn't help I will just have to live with it.

[XYZ9 in reply to bantam12]

I’m sorry to hear you have suffered for so long, I hope the hysterectomy will give you some relief

[Skye22]

Have a look At CAPPS/chronic abdominal pelvic pain syndrome. There are some really good explanations and studies online on what can cause pelvic pain. I was shocked in just how much pelvic pain is interrelated with other conditions. Hope you get the help that makes you feel the best that you can. Stay strong!!

[XYZ9 in reply to Skye22]

Thank you so much for taking time out of your day to reply, and for your support - I will certainly look into it

[svaillantkenn]

My situation sounds similar to yours. I have been diagnosed with pelvic congestion syndrome but have not gotten coils since my symptoms diverge from the typical ones— more pain with sitting than standing, for example. I truly believe that many of us our suffering from a combination of tight, weak muscles and tight fascia, which irritate the nerves in the pelvic region. Hence I have found the most effective treatment to be nerve and Botox injections, combined with physical therapy and an at home exercise program to strengthen the pelvic muscles. In addition, one has to contend with central nervous system sensitization if one has had pain for a long time—acupuncture and meditation can help with this.

[XYZ9 in reply to svaillantkenn]

Thank you very much for taking time to reply and for all of your suggestions - you have given me hope that some of these things may help