This is my first post, but I feel like this is my last hope.. I don't know where else to turn to..
I am 24, mother of 2 children. Pain started when I was pregnant with my youngest. Everytime my husband & I had sex, right afterwards I would get pains that literally felt like contractions & so doctor advised to stop having sex, which we did.
After giving birth, & we had sex the contracting/crampy pains returned. Obviously now knowing they weren't contractions. The pain is at it's worst a few days after my period has finished. I wondered if penetrative intercourse was the cause but even if there is no penetration & I have an orgasm, within half an hour I am doubled over in pain. We rarely have intimacy anymore because he doesn't want to cause me pain and to be honest I cant face the pain. The pain is now there pretty much everyday!
I have been going to the doctor for over 3 years now.. During this time they have prescribed various painkillers & referred me to a gynaecologist.
I am currently on 50mg amitryptline at night and cocodamol 4 hourly, sometimes even more frequent when pain is really bad. I have my scorching hot water bottle pretty much 24 hours, so bad I now have quite severe Erythema ab igne on my stomach. The amitryptline definitely helps through the night, I can get a few full nights sleep a week but some nights even that doesn't help. I feel the pain gets worse as the day goes on but I wonder if this is because the amitryptline will be wearing off as the day goes on.
The bloating is so bad I have to wear my husband's baggy t-shirts to bed as none of my clothes or pjs fit at night. My big bloated stomach is SOLID. I take pics before bed then first thing in the morning and the difference is UNREAL. I look at least 7 months pregnant before bed.
I waited 7 months on the gynaecologist waiting list, whilst on it I was so desperate I was looking for private healthcare but there's no way we can actually afford it! I finally got seen 3 weeks ago. Had such high hopes for my appointment. I was in there less than 4 minutes. In, on table, extremely uncomfortable internal scan, told scans showed no cysts, she diagnoses as chronic nerve pain & suggested alternative painkillers will write to GP and back out. No questions or discussions whatsoever. Have had bloody discharge & small amounts of red blood since the appointment. 17th day of blood today.
Had my telephone appointment with my GP this morning following up the gynae appt & he said she recommended Gabapentin for pain & that was it. I refused, as my mum takes gabapentin and is like a zombie. I have 2 young children and I work, I can't be a zombie! I can't just numb pain the rest of my life! I already struggle waking up in the morning with the amitryptline. He said I need to stop fixating on finding a cause for the pain & just deal/manage with it. I said if it's just nerve pain then why do I randomly bleed with the pain or after intercourse or orgasm he said it is common for women to randomly bleed and he can put me on a contraceptive pill to regulate bleeding. & the bleeding post internal is probably due to irritation from the internal..
It was him who suggested endometriosis not me, even though it runs in my family.. and so when I brought it up he said the scans have shown anatomically there is nothing wrong so they have ruled that out, but I thought end couldn' be seen on a scan?
I don't know what to do now? Do I just accept it's nerve pain & spend the rest of my life on painkillers or do I keep looking for answers? Is this all in my head? Is there any other self help I can do. I have been looking at endometriosis diet & will try that as well
I can't stop crying, I am so deflated by this news. I feel like I can't do my job properly or be a good mum or wife at this time with the pain and mental torture.
Any advice atall is welcome! Thank you for reading!