Hi everyone, I wanted to ask if anyone has nerve issues - * warning * some of this will TMI. I had stage 4 excision in May, I didn't really get any relief from my symptoms but lots of endo was removed. In about August husband and I were "doing things" and after I had an orgasm I had an odd feeling down below, like the orgasm never fully went away.
Since then the feeling been quite intense sometimes, always there to varying degrees but I'm never actually "close", mostly just fullness around the vagina and tingling. I also get popping feelings inside randomly, mostly around clitoral area but can be anywhere (vagina, rectum, thigh) and an either cold or pain down the back of my right leg, which can be just an annoyance or like today had woken me up with pain. I've also noticed the worse the leg feelings the worse the clitoral feelings are, and there is a link to my bowel too as both are worse when I need a poo.
I assume this is nerve issues but no one including my doctors will do any investigations, just telling me I've "had lots of surgery so I should expect nerve damage", which I think is a horrible response. This feeling is really scary and overwhelming and makes me feel embarrassed in public in case it gets worse. It's also really made me scared to get aroused in case again it makes the feeling worse permanently as I've read there's conditions like that that sound horrific.
I was wondering if anyone has had similar, or if you have never damage can advise the best person / specialist to help please?
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G3miniStar
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I have never experienced this but just wanted to comment and say please don’t feel embarrassed - if this is something you’re finding difficult please go and speak to your GP or the consultant who performed the surgery as it seems like this could be an after effect!
Hiya, thank you. Unfortunately I've exhausted quite a few avenues trying to get some answers from the doctors and consultants and I've been completely upfront with what's happening. No one can give me a straight answer and at best I'm being told "you've had three surgeries, you're likely to have nerve damage". The GPs also keep pushing me onto new and wonderful nerve blocker medications which aren't doing a thing. It's so upsetting and I'm just hoping this feeling doesn't get worse, otherwise I don't know what I'll do or how I'll cope x
Sorry to hear you are suffering. I have had not quite the same but signs of nerve damage ongoing for over a year. Just messaged you directly re a nueropelvic specialist who I found most useful. Hope it helps.
Hi, I wish I could give you an answer ,but I had the same issues ,it’s awful .I have been given the same response nerve damage ,when I pressed for answers he said I told you to expect nerve damage and palmed me off with Amitriptyline which I didn’t take for a month after getting I was so angry and hate taking meds.I become desperate for relief though and decided to try and I have to say they have eased it a lot .The ladies area has improved intimately and the rest is inthe background not consuming me anymore .Hope this helps the only thing you can do is press for some treatment as they really don’t care about nerve damage ,I think their attitude is well your out of pain what more do you want ..take care .xx
Hi, I have completely the same like you,and my operation was in April this year. The doctors told me to wait 6 months before going back to them.But the pain,the nump feeling, the pain down is still there, In the meantime as I was going to different doctors and was persistent, they test me for various bacteria and it turned I had ( various bacterias during this time)Streptococcus B,trush, Bacterious vaginosis ,Ureplasma and Gardinella, SIBO as well and maybe something else which They have not tested for.The reality is my surgeon told me that they can only treat something they see so at the moment we are treating the things one by one. Got rid of the BV,the trush Streptococcus B tried SIBO with two two round of Rifaximin and now I'm on vaginal antibiotics ( for the Gardinella)plus Doxycyclin for 3 months to treat the Ureplasma.(this is really difficult to treat) so hopefully will go away when I go back in January for retesting but could still be there. As my execution operation didn't help with any pain relief and bloating, constipation, the surgeon told me that probably I have aggressive form of Endometriosis with dysbiosis which is viscous circle and the only hope is to treat what it comes and hopping my immune system to decide to start working back normally again I have been on absolutely healthy living and following the Dietitian program for a year now. The last resort is full hysterectomy. My advice is check yourself for ureplasma, Gardinella BV,Streptococcus B and Mycoplasma, as apparently they can have this effect on the clitor and the urethra. If in the meantime the treatment helps me I will let you know xx
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I have been on absolutely healthy living and following the Dietitian program for a year now. The last resort is full hysterectomy. My advice is check yourself for ureplasma, Gardinella BV,Streptococcus B and Mycoplasma, as apparently they can have this effect on the clitor and the urethra. If in the meantime the treatment helps me I will let you know xx
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