I’ve never been formally diagnosed with endometriosis but was told by my GP at 14 that I likely had it, but there was no point in confirming as the procedure to do so was evasive, there’s no treatment except the pill, and it would all sort itself out once I got pregnant. Symptoms were long heavy periods (12 days), huge blood clots, fatigue, period pain, severe pain when ovulating, pain during sex and bowel related symptoms. I was put on the pill for years which did improve the symptoms but affected my mental health significantly.
Fast forward 17 years, and I’m 31, TTC and anxious that undiagnosed and untreated endo are preventing me from getting pregnant. I did come off the pill 5 years ago and my endo symptoms didn’t seem to come back in full force. The only remaining symptoms I have are bowel related, pain during sex and I experience a lot of clotting during my period which is now only 4 days long.
I visited my GP, told her my background and my concerns over my fertility. To my surprise she listened to me, referred me for an ultrasound (not the gold standard I know) but also said she would get a full panel of bloods done. I didn’t actually ask what she was getting tested bloods wise as I presumed it would be things like estrogen, progesterone, testosterone, AMH etc. When I rang my GP reception for the results it’s turned out that she’s tested me for Hep B, Hep C, Rubella immunity, Syphillus, HIV and Chlymadia. I’m so confused, what would they have to do with endometriosis? Has anyone had a similar experience? The results have all come back clear (including the ultrasound but no surprises there) and I’m not sure whether to make a follow up appointment?
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irishwife93
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The first GP that took me seriously for endo did pretty much the same - sent me for ultrasound and did tests for other things. I think it’s because the symptoms can overlap and they just need to rule out that you don’t have anything else while they investigate endo, which can take quite a while.
For me, my US showed a cyst and that was the key to getting a diagnosis. But endo doesn’t always show up on them.
My advice would be to go back to your gp and ask what next? It’s ridiculous how they’ll do a load of tests and then they all come back fine but the gps then don’t suggest another avenue of investigation! It happened to me several times!
Thanks so much for your reply, totally agree with you. Getting the results from the receptionist blocks off any further discussion and then you’re back to square one! I will book in another appointment for sure.
Hi, she’s possibly just checking there aren’t any other causes for your symptoms.
Re. The ultrasound, I had one every year dating back to 2017 that all said everything was fine, because the wrong people were carrying out/reviewing scan results. It wasn’t fine.
‘It will all sort itself out when you get pregnant’ is everything that’s wrong with healthcare proffesionals and this disease! That’s not how it works, and as we know left untreated/unchecked can cause all sorts of fertility issues.
Have you been actively trying for a baby? The ultrasound needs to be carried out by an endo specialist or someone with a special interest at the very least to have the best chance at spotting anything. Ideally though an MRI is much better, I’d tell the GP you want further investigation and to be referred to the hospital Gyne where you can request scans are looked at by the appropriate persons.
At this point I only have a sliver of hope left for my own fertility due to delayed diagnosis. It’s a horrible headspace to be in, you’re not alone 🤍
Thanks so much for your response! I have been trying for a baby for several months and with no success. The technician who carried out the ultrasound did ask lots of questions about my history and checked whether my ovaries were moving around to rule out adhesions but I guess it could still be missed, especially if it’s mild or in areas more difficult to see. I am hoping I haven’t left things too late and my fertility has been affected. Luckily my endo symptoms are much milder these days as I don’t know how I’d cope otherwise!
Have you been tracking ovulation with bbt and ovulation tests? I used to do bbt before I had my little girl. My periods were irregular so I did this just so I knew when to expect my period. I haven't been formally diagnosed with endo yet but I've been suffering from heavy and painful periods since before my teens.
the blood tests she’s done will be in case you need a fertility clinic referral. It’s a prerequisite of having fertility treatment that things like HIV are tested in case you have IVF and your eggs or embryos are stored.
Heavy periods and huge blood clots sound more like adenomyosis to me. But adeno can co-exist with endo, I think lots of people have either one or the other, or both at the same time. I agree with what the others have said about going back to your GP for further investigation. Ideally, you want them to send you to a BSGE-accredited endometriosis clinic (you can check out their website for centres close to you - bsge.org.uk/centre/category....
When I decided I'd go for excision surgery I didn’t want to be referred to a general gynaecologist so after doing a bit of research I asked my GP to refer me to a specific endo specialist at a specific clinic and they did it. I think a few of the above centres are part of the NHS but I went private because of the awful waiting times. I’m not suggesting surgery btw but even if you’re just looking for a diagnosis or options related to fertility that’d be something best done by specialists.
Also agree with Tangoandmax about ultrasound needing to be done by specialists because they are much better equipped at seeing things that most other US technicians can't.
Can’t really comment on your test results. I was only told that my white blood cell count was high (something I was already aware of as it’s been high for many years) and a high CA-125 which is usually a tumour marker but it can be elevated in endo too. I might have been tested for other things but they didn’t tell me.
Good luck with everything and hope you get the help you need!
You are not alone, it took be until I was 38 to finally get a diagnosis. GPS and general gynaecology are a complete waste of time. You need to try and read and educate your self about the disease (this group is v helpful). Go back to your GP and tell her you want to be referred for an appointment with a BGSE endometriosis specialist. You have a right to speak with a specialist. It’s a complex disease and GP and general gynaecologists don’t have the knowledge or experience to give advice. Others wise you will be in the same position 10 years down the line.
You could pay privately for your first appointment and follow up with the GP with the letter and advice to speed up the process. My best advice is not to wait, you know your body. I was told repeatedly that I was only a routine case and nothing urgent and I became so unwell last year I lost my job, my apartment, everything, I now have large debt. It turned out I had stage 4 Endo with lesions all over my bowl, bladder, adhesions everywhere, large cysts. This was all flagged on an MRI scan (which I was told was not necessary before).
I ended up paying privately because I became too unwell, I couldn’t even leave my house. If you don’t have much knowledge of the disease and treatment it’s likely you will be mis lead and fobbed off by the NHS over and over again.
There are many great surgeons with great advice and there is a a help out there.
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