How is Endometriosis diagnosed?

How is Endometriosis diagnosed?

I am 100% certain I have this only tonight after googling it I have realised there is a name for it.

3 years ago when I had my first smear test I discovered I had abnormal cells & had a colposcopy- this showed that everything was really red & inflamed - the nurses reassured me that it is normal for people my age (25 at the time) however said it will probably hurt when you have sex (which it still does) I also had a cervical biopsy however the results came back inconclusive (I never had another one) after more check ups (smear tests) the cells went back to normal.

I came off the pill 16 months ago as I decided I would like to try for a baby. (Have no children yet) Since coming off the pill my period seems to be getting worse every month (I can be in excruciating pain but there is no blood or small clots of blood. I struggle to go to the toilet, shake because the pain is that bad (feels like I'm having baby contractions even though I have never had a baby... I imagine they are just like that or even easier) , I lie crouched on my side in bed unable to move, my back hurts like I'm an old lady & find it difficult to walk. The last few time this has happened As well as ibuprofen I hold a hot water bottle on my belly to ease the pain but without even realising I scolded my belly (3rd time I have done this) - taken a pic to show doctor how bad it is to Ruin my own Body like I have. :-( (posted a pic of my gross belly)

I am going to go to the doctors first thing on Monday something I think I should have done long ago & hope they refer me to a gynecologist.

I really hope I can have children & really worried about this now as I feel time is running out anyway as I am nearly 29.

Does it sound like I have endometriosis? It is only bad like this when I'm on not all the time.

I also want to know how do they diagnose it? & How long does it take?

Would be great full for any advise thanks so much Leah x

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  • I'm sorry to hear you're in so much pain! When I first saw a GP about similar symptoms they explained that painful periods can be due to a number of conditions (Endometriosis, PCOS, Thyroids is a few that I can remember) so seeing a Gyne will definitely be a good way of working out what's wrong (you can request to be referred to one if your GP doesn't automatically do it). It's likely that you'll have blood tests, swabs, ultrasounds and internal examinations to check what's going on, this can sometimes be before your Gyne appointment or during it.

    To diagnose Endo the Gyne will take into account your symptoms, blood test/ultrasound results and internal examinations. If Endo is suspected they'll perform a laparoscopy to see whether there is any Endo present and then work out a treatment plan.

    I've noticed it's a bit hit and miss when it comes to getting diagnosed. I know a few women that only had symptoms around their periods, they didn't have a laparoscopy to diagnose Endo 100% but were given medication to take before and during the periods and they experienced no symptoms whilst taking it. Whereas with some women (including myself) a laparoscopy was needed. It took about a year from seeing a new GP to getting the laparoscopy; mainly because the first hospital/Gyne I was under was useless and I had to have a few scans and try a range of medications first. When finally seeing a lovely Gyne at a better hospital I had to wait 4 months from the appointment for the laparoscopy. I know it sounds like a massive wait and I hope you don't feel even more stressed or disheartened about it, every doctor/hospital is different so you may be seen a lot quicker, just make sure you're persistent with the doctors!

    There's a wide range of things GPs/Gynes will try to help you with your symptoms (such as pain killers, hormonal treatments, surgery) and a number of clinics that they may further refer you to like an Endo Centre or Pain Clinic. (I'm not 100% sure on the criteria for being referred to these). You might also find a Tens Unit/Machine might help you with the pain. I picked one up from a pharmacy, although it doesn't get rid of the pain, I do feel like it takes the edge off of it.

    I also would try not to stress yourself about having a family just yet (I know it's hard to do and I panicked just like you too, so I know how you're feeling). My mum's friend has both Endo and PCOS and she had a baby last year at the age of 33.

    I hope this helps you out a bit, I know how difficult it can be in the first stages of getting diagnosed. I would probably say try not to Google too much as there are some websites out there that will terrify you and stress you out even more (speaking from experience lol). endometriosis-uk.org/ has a lot of great and helpful information on there if you haven't already tried it! :) x

  • Thank you

  • Hi Leah, sorry to hear of your struggles. It does sound like you could possibly have endo, you have ae of the symptoms for sure. I felt the same way as you. After years and years of suffering and bring fobbed off be GPs I founds put about endo and went, oh my god! This all sounds like me! If you think it's what you have you need to be referred to a gynaecologist who can assess you properly. The only way to actually diagnose endo though is to have a minor op called a laparoscopy. There are trials underway to try and develop a blood test for the future so as to avoid surgery but at the moment the surgery is the only way. It took me about 8 years to get my diagnosis so if you think you have it my advice is to really push your GP to refer you!

    There is loads of information and advice on this site so you can search but a specific thing and find a whole world of info.

    I wish you all the best! Good luck with your GP!

    Xx

  • Thank you

  • hi I cant give you any advice as am waiting on going for my lap as they think I have endometriosis but I can say is that my pain is exactly like yours I vomit with the pain am the same with the hot waterbottle and ordinary painkillers do not work and like you when my pain gets severe I cant pee and my whole body shakes with the over all pain I would get it checked and insist press your doctor my doctor wasn't going to refer me to a specialist but I insisted and even when he wrote the letter of referral he insisted nothing was wrong. I hope you get sorted and reffered to a specialist who with go through all your symptoms and talk through options wtc goodluck xxxxx

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