After being gaslit by GPs for years and many cancellations, I'm finally seeing a gynae to discuss my potential endometriosis. It's not actually my first gynae appointment as I saw a few whilst I was pregnant, but this appointment will specifically discuss the severe pain and blood loss I experience during my period and also inbetween periods.
What can I expect? I'm scared of having a laparoscopy and then the surgeon doesn't find a cause of my bleeding and pain that I've endured for the majority of my life (started period as a pre teen and I'm in my 20s now). I've heard that sometimes MRIs can pick up endo and adeno? My ultrasounds came back normal.
Thank you for reading and I'd appreciate hearing your experiences.
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16yearsofpainsofar
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I had an absolute nightmare with my first referral but didn’t know anything about Endo/Adenomyosis at that time. My second referral I went armed with my pain diary, diary of all other symptoms so I couldn’t be fobbed off. I’d advise you to record and share at your appointment.
I’d had numerous ultrasounds spanning seven years, internal and external which showed nothing. My latest, was reviewed by someone with a special interest in endo, this showed Adenomyosis. I was then pushed for an MRI due to symptoms which showed numerous signs of Endo, and tethering of organs and I’ve now been referred to a specialist centre as my local hospital are not equipped to operate on findings.
If you can, make sure scans are carried out/reviewed by someone with a special interest as minimum. A specialist would be better. Otherwise the likelyhood is they’ll come back as no endo unless you have endometrioma on the ovaries as this is easily visible to standard sonographers.
Thanks! How do I know the gynae is an endo/adeno specialist or has a special interest in this field? Would the person doing the ultrasound or MRI also need to be a specialist? I can't afford to go private.
My consultant wasn’t a specialist she did nothing but request the scans to be fair, but she made sure the correct personnel in the radiology department carried out my ultrasound/reviewed MRI scans.
I would just mention that you’re aware endo/adeno can be missed on both unless looked at by someone with a special interest or are a specialist and can they request the correct individuals are involved. My consultant said all hospitals should have at least 1 person in Gyne and Radiology who have a special interest now, I can’t be sure how true that is but it’s worth requesting. Especially if your symptoms match up.
You shouldn’t have to go private. It’s just knowing what to ask for and not letting them fob you off. You know your body, so just stand firm and if need be always ask for a second opinion. 🤍
Yes I have all the endo symptoms unfortunately. I will definitely request this and hopefully there is a specialist doing the ultrasounds and MRIs. Thanks!
Thank you for sharing! I can relate to your experience and I am soon to be going through the same consultations. I never thought about how my GP's contributed to gaslighting so I appreciate the comment. My menstruation started at the age of 11 years old and I have endured years of pain. Despite taking the contraceptive pill since the age of 18 yrs I still had excruciating, heavy periods and was only advised to take paracetamol. After a sonogram 2months ago, I was told that it was highly likely I have endometriosis. I am now nearly 49years old, The pain has subsided during my 40's but I still want confirmation so I can now see if the medications I'm taking (since I hit 40 I consume quite a selection of tablets) are suitable for me, my dietary intake is suitable (I'm vegetarian and eat lots of tofu, soya and oestrogen based food groups) and finally I'm going through the peri-menopause where symptoms are starting re-emerge. This is my main motivation to push for a diagnosis finally after being fobbed off for most of my twenties, giving up and accepting this was a way of life in my thirties and finally in my forties's (although I'm 50 next year!!) I want to end this cycle with as much self-care as possible. ☺️
It's so awful to suffer every month only for doctors to say you're just a silly woman. Childbirth was easier than my periods! You're a similar age to my mum (although she hasn't started perimenopause) and the severe pain stopped when she had me in her early 20s. However, her periods are still very heavy. Mine are heavier and it just disrupts my life
Hi, I can hard relate to your experience. The constant gaslighting is sadly true. I'm pleased you've now got a gynae referral but please do go prepared. Recommend taking a pain diary (endo uk have a pain/symptom diary you can download). You may find it helpful to write down all your questions so you don't forget anything as I know how overwhelming it can be especially when they are trying to fob you off. Ultrasounds can quite often show nothing despite endo being present so do challenge this if your medical professional is trying to discharge you on that front. This was my experience and I found myself having to get very firm/assertive for them to do anything. I then had a pelvic MRI which showed a large endometrioma and they suspected endometriosis. It was then over a year wait until I had laparoscopy which confirmed endo. I think your fear of them doing the op and finding nothing comes from all the historic gaslighting. Trust your body, the pain and symptoms are NOT normal x
Thank you. I saw the gynae yesterday and he's put me on the waiting list for a laparoscopy. Says it'll be a couple of months. He told me ultrasounds don't usually show endo and he's not doing an MRI because a lap is the only way to diagnose endo. I'm still worried that they might not find endo even though my symptoms are textbook endo. I don't want to be left without any answers. Like you said, it's probably because I've been gaslit since I was a child.
He says the usual treatment is a mirena coil, but I'm hesitant because I didn't get on with any of the pills I've tried in the past.
I think it's good that they've put you straight on the waiting list. My understanding is that formal diagnosis can only be given via laparoscopy. My MRI results showed the endometrioma (ovarian cyst) and kissing ovaries which highly indicated endo then I was sent for the lap to formally diagnose and treat it. During my op I had the mirena coil inserted as that was recommended. It's still too soon to properly comment on it at moment as I'm still healing from op but am hopeful it will help with symptoms. Currently having first period since op and it is a little easier. But understand it usually takes around 6 months to see true effects. I heard good and bad experiences with the coil but wanted to see how my body reacts to it as everyone is different.
Hope its not a long wait for you and you get some answers. It's such an emotionally exhausting place to be isn't it. Almost wishing for the diagnosis just to provide some answers but then it's bittersweet when it comes. I hope they can find what's going on either way x
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