Endometriosis UK
36,052 members32,030 posts

Does this sound like Endometriosis or something else?

Hello,

I have been stuck in limbo for two years now not knowing if my symptoms are Endometirosis or Pudendal Neuralgia or Pelvic Floor Dysfunction or a Hormone Imbalance or stress/emotionally caused, a combination, or something else entirely. I would appreciate your thoughts as I would like to cross Endometriosis off my list of possibilities if I can, as I seem to be going around in circles and as we know - effective treatment depends on an effective diagnosis and I just can't seem to get one.

My symptoms are: vaginal pain on one side everyday (kind of the vaginal wall and also now the entrance of the vagina), gets a bit worse during my period. It goes away often with walking, running, exercise, stretching, heat, massage and is made much worse by sitting down. It often spreads to anus, perineum, gluteal. My periods are not heavy and only a bit painful (I take some pain relief on the first day and second day and it doesn't stop be getting out). My pain is really low down in one spot inside the vaginal wall and not in my uterus or abdomninal area (not what I understand to be regular 'cramps'). I have a problem with my cycle. I have light bleeding (more than spotting from day 23-26 of my cycle, then a 'normal' period of 5-6 days on day 1 (28 day cycle). I sometimes have a little spotting on other days. I have two children, no difficulty conceiving. I bled during both pregnancy without explanation. Sex is not painful (but is very infrequent as it seems I'm always bleeding/spotting and/or in pain).

I had a lap that was negative for any Endometriosis (private gyn with endometirosis experience). He found a little mild inflammation on my pelvic wall only. I've had many ultrasounds, a pelvic MRI, colonoscopy all clear. Uterus normal size, I ovulate etc. Pelvic physiotherapist said very tight msucles on side of pain. Her exercises relieve pain while I'm doing them but it comes back as soon as I sit down. 2nd and 3rd dr opinions really have no idea. Hormone testing showed slight imbalance (but within ranges) and progesterone made me worse. The Pill suddenly makes me sick (although I took it before children.) Mirena made my periods painful and I bled for months and months.

Please share your thoughts. This doesn't really fit with endo does it? The pain started suddenly at a very stressful time in my life. I am just hoping by a process of elimination I can get to the bottom of this and get the right treatment. I hate not even having a diagnosis.

Thank you for taking the time to read :)

2 Replies
oldestnewest

Hi Samantha,

I am new to this forum but came across your post.

I am 38, have two children and have a history of endometriosis and vulvodynia. ( pudendal neuralgia) They are both equally horrible conditions and even though both are affected by stress/ hormones they are also present themselves very differently.

From what you have written ( I am not a medical person) but from my experience I think you have vulvodynia not endometriosis. Vulvodynia ( or nerve pain) seems to come on during times of stress and can be triggered by an infection, thrush, change in soap / UTI or the contraceptive pill. It can be very painful, very annoying and very upsetting. It does not affect your periods or fertility. It's simply the nerves mis firing the pain messages. I have had two flare ups. One after getting thrush and one after a vaginal strep infection. ( caused by the pill) Antibiotics didn't hugely help but taking a low dose of ammitryptiline did. Ask your GP. 25mg. First time it took my burning / soreness away within the week. Second flare it took a bit longer to work. I had it about six months. At the entrance. Just on one side. It was v painful at times and v v upsetting.

Email me if you need any further info

Katiehales79@gmail.com

Hugs x

1 like
Reply

Thanks so much for your reply. I don't think I have vulvodynia because that is external pain - on the vulva area and mine is internal mainly in the wall of the vagina. Pudendal Neuraliga is a different type of nerve problem, which is more in line with my symptoms (and causes internal pain esp with sitting) but my pain just stated randomly, no cause etc. which is odd for PN. If you have vulvodynia, you should look up Abigail Stiedley - she has an amazing story of recovery via an alternate method. She has a website. Thanks again for your reply :)

Reply

You may also like...