Negative lap but painful sex.

[Vegechi]

For the last ten years I've been suffering with painful periods, heavy clots, extended bleeds (up to 30 days), irregular periods, Pelvic pain, sharp pain in sides, leg and vagina. I also have fatigue, nausea (while on my period), bloating, diarrhoea before and during my period and painful Doctor exams, pain with tampons and pain with intercourse.

My first lap came back negative, so I'm trying to book with a specialist for further testing and advice.

I've been looking into the difference between vaginismus and endo sex pain. I can have sex some times, other times it hurts. Some times i bleed after.

It hurts when entering the vagina and leaving (sorry to be graphic)

I just think it would be helpful to know what the pain/experience is for people with diagnosed endometriosis?

Any help would be greatly appreciated.

[SarahMia227]

Hiya - I was diagnosed with endo at 22 in 2017, via a lap. I have lesions on my pouch of douglas (a key one for painful sex, apparently), left ovarian fossa, and both ovarian ligaments. Painful sex was my first symptom and why I started trying to get answers, but I also get bloating and stomach pains, and fatigue. In terms of the pain, it hurts at the entrance and inside, kind of like being stabbed with a large knife (I know, it's super hard to describe!) I've always been told that endo pain is "deep", so when the penis is fully inside, but honestly, I've never been able to tell if it's deep and shallow, just that it hurts on entry and then doesn't stop hurting!

While trying to get diagnosed, I ended up at St Mary's Hospital in Paddington (it's a long story!). I have an amazing doctor there (I'm not sure if we're allowed to post names?), and they have a specialist team who deal exclusively with sexual problems. He diagnosed me with (I might get the words in the wrong order) chronic vulvodynia. Vulvodynia is a rather unhelpful word that means painful vagina, but better than nothing! He's not an endo expert, and we don't know how related, if at all, my painful sex is to my endo. In my personal opinion, I think the endo triggered it and then it took on a life of it's own, but that's speculation, I'm not a doctor!

The first thing we tried was physiotherapy. I had an amazing physio at St Mary's, and we worked together for maybe 8 months. I found that it helped a little - my vulval area has less pain, and I can tolerate a single finger without pain, but two fingers to full intercourse is still incredibly painful. I'm now trying nortriptyline, but I've only just started that so I don't know how it's going to go. It hurts every time I have sex, I've not had pain free sex for around three years now. I've only ever bled once after sex, and I think that was a fluke. It does hurt after, sometimes only a little, sometimes so much that I have to take painkillers or take a hot bath.

I hope that incredibly long essay on my sex life helps a little bit!

[Vegechi in reply to SarahMia227]

Thank you so much for the reply, hearing other peoples journeys help me in figuring out where to head next. It's great to know there's help out there for me somewhere.

Thank you