Endo pain in their genitals?

Hi ladies, I apologise in advance for TMI and I'm embarrassed to ask this but does anybody else get pain in their genital area (clitoral area)?? I'm beside myself. I still do get the usual pelvic pain, ovary pain, pain running down my left buttock into my legs, and groin pain. But the most disturbing pain is the outer genital region - clitoral -that radiates upward into my pelvic area. I was sure that it was my urethral area but when I pointed out where the pain was my gyn said that was the clitoral area and its nerves rather than the urethral opening. This pain is very upsetting, more so than the pelvic pain because it is intimate and I wouldn't want anyone to go near me! It only happens when my pelvic endo symptoms flare up. I find this really upsetting and comfortable because it feels like I have a UTI but without the burning and urgency to pee. I am single and 40 and very down because I can't imagine ever being able to find a partner when I feel unsexy and unattractive like this. I have been on zoladex for 5 months - obviously hasn't helped! (I will post that topic as a separate post) x

9 Replies

  • I have a pain that feels like its shooting up my vagina and I have been told my pelvic floor muscles are very strong and they cramp because I use them all the time, I have had physio to try and solve it but to no avail and so I do think its endo related and it's hurting there because that's where the Endo is on the inside of us, like I have it in my POD (google it) so that's probably why I have the pain in my vagina through to my anus (I know, tmi) so it would be worth finding put where you have it and see if it can be treated, good luck hun, keep me updated xx

  • I did go to my gyno and he basically doesn't know what to do with me but prescribe me with pain relief drugs. He did find extensive endo on my ovaries when he did my lap in June and then treated me afterwards with zoladex - which hasn't worked on me, pain is back after 5th injection. He did a pelvic examination and said everything looked normal to him. He is very sympathetic but explained that I must be estrogen dominant and my levels are still fighting the zoladex action. and there can be microdeposits of endo anywhere in the body. So I've given the heavy drugs a try. Next step is a naturopath - which is what I should have done originally..

  • Yeah, I pain in my genital area, generally shooting up my vagina/anus. I also get a terrible pain that starts near my right ovary but radiates into my right groin/ labia and then down the front of my thigh. It does sound like nerve damage/pain Cooka- perhaps you could try a nerve pain medication like Gabapentin?

  • When i was in the hospital having my lap, i mentioned having the same thing and the girl in the bed next to me described it like sitting on a screw, so you're not alone in this at all! I also mentioned this to the surgeon but he didn't expand on what it could be! It affects me badly when i have a flare up, though i do experience it on a weekly basis. My GP said that it could be endo by my vaginal opening, which wouldn't have been picked up when i had my lap in May. She gave me some pelvic floor exercises to do but they haven't helped much (i'm only 23, so i don't think anything needs further tightening down there!) Keep me updated how you're getting on! xxx

  • See I was told that my pelvic floor was very strong and I needed to relax them, I'm guessing you were told opposite but neither would explain the pain we have. I didn't think Endo could go as far down as the opening of the vagina, will have to take this up with me GP/gynae

  • Endo is a cell I did some research and found that it can be anywhere in your body which is why they link back pain to it and hip and leg pain as well.

    I read it could be in your lymph nodes and cause people pain in their arms and other areas it's crazy some of the things I have found out about endo in the last 2 weeks

  • I get this too - it's a horrific pain and whenever it hits, I can't sit down. It has really calmed down since having my lap and the endo treated though.

  • Would you like to email me? I have been googling this symptom with my endo for months and stumbled upon your post. it sounds just like my clitoris pain!! I am just wondering if you figured out what it was

  • Hi there, well it actually went away.My gyno said it "could" be referred pain which wasn't very reassuring to me. The other gyno I tried gave me a script for kenacomb ointment which i think may have worked. Either that or my laparoscopy where they excised some Endo ( my pouch of Douglas) . But I can't see how the POD would refer pain to that area. The 3rd theory could be anxiety which i suffered to a crippling state. I think when i tried valium the pain subsided. I'm sorry if this confuses you but i can't really say which it was that helped. But I would say try kenacomb ointment first..? xx

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