My wits end !

My wits end !

I had a complete hysterectomy at the end of Oct 2014. I had endometriosis, adenomyosis & large fibroids removed. I was so optimistic that it would be the end of all of my severe pelvic pain and low moods which had gone on for years. 7 months on from the op I've started experiencing awful burning pain in the right side of my groin that radiates down my right leg almost to my knee. When the pain is at its worst I have to keep emptying my bladder & vowel (just like being in labour). I've had blood & urine tests and all is clear. Just had so many years of all this going on I feel so low and if I'm honest a bit sad & sorry for myself. I spoke to the surgeon that did my op yesterday for some advice but he feels the symptoms I'm describing are unconnected to my surgical procedure. Any help or sharing of similar experience would be so gratefully received. Thank you.

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  • But what did the surgeon suggest if anything? He's being careful in his words I feel.

    I went back to my surgeon with problems after gynae surgery and asked for MRI but was refused. I can understand the sadness and low feeling. it takes longer than one thinks to get over a major operation but I feel you have to go by your instincts here and assume it is connected in some way. There will be others on here and the Internet who will have an experience of this op and after effects.

  • Hi Rosepetal60

    Thank you for your response. I do feel my instincts are telling me that everything is connected. The surgeon said he was more than happy to see me again to "put my mind at rest" that all had gone well with my surgery. I will go back and see him. I am feeling in my heart that this may be something to do with pressure on nerves or something along those lines.

    I appreciate your comments. I feel like I'm going mad some days.

  • Hi AGood

    I'm so sorry that you are in so much pain after what should have been a positive life improving surgery. I had gynae surgery 18 months ago, I had an an anterior wall repair for bladder prolapse and a perineorrophy (attempting to make a perineum where there wasn't one) this was all following a horrific childbirth with a lot if damage. Both procedures have caused more problems and both were unsuccessful. To cut a long story short I've ended up with pudendal nerve entrapment and pudendal neuralgia from the surgery, recently diagnosed in London. Aswell as a host of other issues! It sounds like you may have something trapped or pinched nerve wise as a result of the surgery. I am still learning a lot and I'm sure there are others on here far more knowledgable than me but as far as I've worked out the pudendal nerve branches off into do many areas throughout the pelvis, including deep in the bottom and hip area, clitoral area, labia, urethra and many others that affect bladder and bowel. If you are able to I would say please ask for another gynae or uro gynae specialists opinion. The surgeons that accidentally cause these horrible debilitating nerve issues never want to admit it was a result of their surgery. I know there are a few good experts in the uk if you are able to afford to go privately, I'm not unfortunately and have been going through a very lengthy process with the nhs. Not sure if you're even in uk. Please feel free to send me a private message and I will give you any info I have. You are in the right place in this forum though, there are many ladies and sometimes men with these issues and there is a lot of helpful advice available, please don't despair, there are things that can be done but you need to get someone to assess you who knows about pusendal nerve issues. Bug hugs and take care xxxx

  • Big hugs even ! I've got fat fingers for typing! And pudendal nerve not pusendal! X

  • Thanks pudpain. So sorry to hear all of your struggles too. I do hope one day you will have some good quality of health. I had my surgery done privately, I'm pretty confident that the guy did a good job. My utter despair is that the pains I still get are the ones I way having before my op, except worse with a few more bits thrown in for good measure : leg aching, bubbling, swelling alongside all of the groin and back pain. I feel you're on the right track with the nerve entrapment. It would be so lovely to have a pain free week, I've forgotten what that's like. Good luck to you and yes, I'm in the UK. I live near Worcester. Xx

  • is it actual inflammation that you have or just feelings of inflammation even though there is nothing to be seen?

    I had the exact same problem a year ago. It took a long time on amitriptyline and lyrica along with a sugar free diet, magnesium and a whole bunch of NSAIDs to control the inflammation. The only difference is I never had a big surgery and it was only the external vulva thta had problems

  • I have had all the same issues as you with the exception of fibroids, but plenty of cysts. At the age of 40 went through partial hysterectomy for the adenomoyosis, left the ovaries. Still had pain so then started treatment for Endo, went back into surgery to remove ovaries, still pain. Here I am 4 years later being treated for Pelvic Floor Dysfunction. With what you have described above about your pain I would talk to a Uro-gynecologist who specializes in this area. A lot of better answers and options for treatment. Worth it to check out. Seeing a light at the end of the rainbow here but still struggling day to day. At least I have a diagnosis with options left to try to live a normal life.

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