I need some advice! : Hey everyone just... - Endometriosis UK

Endometriosis UK

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I need some advice!

Mae20 profile image
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Hey everyone just looking if someone can help me. I’m 20 years old and I have experienced severe period pains since I was 14, these got to the point where I wouldn’t attend my education or work because they would hurt so much I couldn’t even walk. I also experienced lots of blood clots so my gp put me on the pill to help regulate my periods. Since this I’ve obviously got intimate with my boyfriend but over time it was hurting more and more to have sex, it almost felt like someone was cutting my vaginal wall or like it was closing up. It’s now at the point I can’t actyally get intimate with him and it’s becoming frustrating. I’ve been to the doctors 5 times about the intercourse side of it (I hadn’t made the link of the bad periods until discovering endo) my gp did blood tests, vaginal swabs and urine tests, she even looked inside of my vagina but all tests came back clear each time. I stopped going to the doctors because it became so frustrating and they just put it down to my boyfriend having a large penis. I know that the pain I’m getting is very extreme and after intercourse it feels like someone is stabbing my uterus. I’m stuck on what to do, does this situation sound like endo and shall I push for this at the doctors?

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Mae20
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luthien profile image
luthien

Hi, sorry that you're going through all this :(

It's something we need to push for as most GPs don't recognised or know what to do with endo. Best thing is to write down / have a diary to record all your symptoms. I use a page a month sort of thing. Put on it, if you're still on the pill, when you stop (non pill days) when your breakthrough bleeding happens, how heavy, any other symptoms any other time of the month, what painkillers you take, if you needed a day off work, when you had sex, what symptoms were there then and after. I know it's a lot but if you have it all written down then you can go to your GP and push for a referral.

With the referral you want to be diagnosed, which involves a laparoscopy; it's the only formal diagnosis for endo, so you need to push to be referred for that and mention it needs to be with an endo specialist. You can check specialists out on the BSGE website. That website also lists all centers / clinics that specialise in endo, if there's one near you, see if you can drop in and have a chat to the secretary / call them. If you call sometimes they'll book an appointment or ask you to mention their details to your GP, it can help speed up the process compared to waiting on the standard NHS gynae waiting list.

Hope that helps a little xx

Mae20 profile image
Mae20 in reply toluthien

Thank you so much, this has cleared things up for me. My boyfriend wants me to go straight to hospital because of the pains I have been getting but I don’t know if this would make the process longer rather than a regular referral with my gp?

luthien profile image
luthien in reply toMae20

Hopsital may just treat it as an emergency and offer pain relief, that's it, they may not even have a gynae specialist see you. They'll need a referral from your GP to see a specialist, endo ones are even rarer.

princessk09 profile image
princessk09

Hey, I know how frustrating it is going doctors and not being taken seriously due to our age (I’m 19). It took me 2 years to get a diagnosis and I’m still having issues now and my endo is coming back.

I have had painful sex ever since I started and it’s ended relationships with guys who weren’t understanding.

You just have to go to your doctors and demand to see a gynaecologist who specialises in endometriosis. It’s the only way to get heard and get help.

During my surgery, they found a cyst and an infection from a burst cyst plus endo so anything could be causing the pains you’re having but a gynae will have more knowledge over a gp xxxx

Mae20 profile image
Mae20

Thank you everyone for being so supportive. I had an appointment today and I’ve now been transferred for a scan and then the laparoscopy which will be referred when I’ve had the scan results. The referral can take at the very least 6 weeks and then the laparoscopy can take up to 6 months 🙁 I’m feeling a bit low but looking into going private for the scan just so it speeds up the process a bit more .

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