Any help/advice/tips please?!

[ShibaInu7]

Hi all, this is my first time coming to a forum like this and I’m just hoping to get some advice..

Sorry it might be a bit of a long one..

For roughly 8 years now I have had issues with my periods being irregular/not normal. I was originally on the combined pill when they used to suggest taking breaks and I’d have such heavy and painful periods, it would always make my stomach turn/gave me upset stomach and pain when going to the loo. My periods would continue going on for 2/3 weeks even after stopping the break in a pack. I was told by the GP that I likely had endometriosis and they recommended going on the coil as this would stop my periods and that they would also test me for endo - however once I had the coil fitted they then turned around and told me they weren’t going bother testing me because the coil treats endometriosis anyway and the test itself is invasive which they don’t really like doing!! I stayed on the coil for 4/5 years but never got on with it, it stopped my periods completely which was amazing but I had constant pain with the coil. I also had a large cyst on my right ovary during the time I was on the coil (have always had constant pain/dull ache on this ovary which I’m not sure could also be endo related?). I could not deal with the pain the coil was causing so discussed other options with the GP - to which my options were the POP pill, the implant or injections. I absolutely hate the idea of the implant and don’t want the injections as they have negative side effects on your bones and I already have a history of osteoporosis with my mum/other female family members so don’t want to risk it.  I decided to go for the POP pill and was told again this should help endometriosis as it has higher progesterone levels, again discussion on actually getting tested for endometriosis was shut down. Fast forward to today and I’ve now been on this pill for 2+ years and I’m having issues with periods. For the first 6 months I barely had anything but things have progressively gotten worse. I have very irregular periods, if you can even call them periods as they are not normal, it’s always dark/brown blood. I seem to be having longer and longer period lengths, went to the docs about it a year ago to be told to put up with the bleeding because coming off the pill and having endo they would be much worse. Though have gotten to the point now where I have just bled for 4 weeks straight and getting really fed up of not feeling normal!! 😞

Been to the docs again today to see what my options are and asked again about being tested properly for endo only to be told that they definitely think I have endo so the test itself wouldn’t help anything - as it’s invasive it would provoke/make the scar tissue worse! They said the combined pill would be best as they now recommend taking it constant without a break however as I’ve had migraines in the past this isn’t an option for me as it would increase my risk of stroke apparently.

It’s been suggested that I take 2 POP pills a day instead of 1 to increase my intake of hormones and see if this helps with the prolonged bleeding, has anyone else ever been recommended this?

I have to go back in a month to see how this goes otherwise I may have to go back on the coil to stop the bleeding but I’m just feeling so deflated. ☹️ It’s also worth mentioning that of all the times the GP has said I have endometriosis not once have they ever actually explained fully what it is/what impact this might have on me in the future, nor have I been given any other advice on how to treat it other than contraception. I’ve mostly looked stuff up myself and seen you can have surgery to remove tissue in some cases but considering it seems impossible to even be tested for it properly I’m not sure this would go anywhere if I asked at the GP!!

Any advice or help anyone can give in general about endometriosis would be much appreciated! Thank you x

[Endo8701]

Hi hunny, feeling really sorry for you after reading your message. You arent being listened to properly. And these so called professionals aren't giving you the right advice. They clearly arent well educated about Endometriosis.

I had to change GPs to be listened to. Plus i moved hospitals too. Research online where your nearest Endo specialist is. If you have fb you need to join Nancys Nook. Its a site dedicated to Endometriosis, with lots of files and info about it. I found my endo specialist on there. He told me people with Endometriosis should never be given the combined pill! And i had been on it since i was 14yrs old - 32yrs!! I was fobbed off for years from docs, gastro docs said i had ibs etc i had surgery with a non specialist and she just ablated my endo on 2018. This year i had excision surgery and lots was found, bowel, ovaries, chocolate cysts, endo in diaphragm. So so much! SSo glad i found my endo specialist. Hope you get the help you need. Get second opinions if no1 is listening to you. Dont let them fob you off with hormonal treatments. Good luck 💛💛

[ShibaInu7 in reply to Endo8701]

thank you for responding and for the advice! Sorry to hear you’ve gone through a struggle with this too, it seems a common theme that GPs and the like are not well versed in this - I too was told in the past that pains/issues I was having was ibs and I was simply given buscopan which of course did nothing, I’m sure it’s endo related it’s always worse when bleeding or around that time! Thank you so much for suggesting that group I have joined it now and will look through their info, glad that you have found a good specialist too! Fingers crossed I can start the journey to finding one, thanks again xx

[Kazh1209]

this is literally like you’re writing my story. I’m so sorry you’re going through this. I would go to your doctor and request that you are referred to your BSGE endo specialist (website is bsge.org.uk/endometriosis-c... unfortunately some doctors will throw every pill at you. I’ve had two laparoscopies, ablation, hysterectomy and now waiting for another lap. Note your symptoms and track everything so you have some back up for appointments. You have every right to request a laparoscopy which is usually the only way they can find endo. I hope this helps a little but don’t give up. The dark blood was what I had all the time and is apparently old blood from higher up?

[ShibaInu7 in reply to Kazh1209]

thank you so much for that link I will take a look! So sorry to hear you’ve gone through all that. Noting and tracking is a good shout thanks I’ve never really tracked it before but it’ll be good to see it all down and use as back up! And ah okay I did think it must be old blood I just couldn’t get why! I really appreciate you and others replying to this, I didn’t really think anyone would respond and it makes me feel much less alone to hear others going through similar things - definitely feeling motivated to push back and finally get something done!! Thanks xx