Desperate for help with chronic pelvic pain after laparoscopy

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 Zoladex injections for 6 months with Livial HRT 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 [edited to remove named specific details to comply with our code of conduct] 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. Thank you xxx

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  • Hey,

    My advice would be to keep a detailed diary (I know it sounds like a faff but it may end up being the key to pinpointing what is causing the pain this time round)- write down what you eat & drink and when, what type of pain your in (rated on a scale for example 1-10), where the pain is and how long it lasts, any exercise or activities you've done listing the intensity and time done etc.

    After doing this for a couple of weeks you may see a pattern start to develop where certain things seem to trigger the pain, make it worse or better or may prove there is no link/trigger at all.

    Sorry I can't provide and answer to reduce the actual suffering but hopefully this should help you and your doctors/consultants to get to the bottom of it :)

  • Thanks for this :) I will take your advice, it's completely dominating my life at the moment so maybe this will help me identify a pattern to be able to present at appointments. :)

  • If you are in the UK I assume you were treated in a BSGE accredited centre?

  • Hi Lindle, yes I was. I was very satisfied with my treatment - I saw an endo specialist who was really great. Technically second surgery should have sorted me out completely but now I'm in more pain than before second (not the first, that was terrible!) :(

  • I have a private FB group if you would like to join as we can discuss surgeons.

  • Thank you Lindle :) I feel shy to post such personal things on a FB group with my name and face etc but will definitely be following for advice in future. Thank you for your help

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