Endo questions....

[kjs81]

Hello all. I posted the following in an endo support facebook group, but had zero response so I hope I can get some advice here! Apologies as the post is long....

I started my periods at 11 and they were always heavy and painful. By 16 when ponstan wasn’t working I was put on the contraceptive pill Cilest. Stayed on it for 10 years until married and started trying to conceive. After several years of trying and tests not showing anything obvious, we eventually conceived via IVF. It was after my son’s birth in 2013 that everything started to go completely haywire. For the first time I was getting severe ovulation pain lasting days. I developed acid reflux, signs of a hormonal imbalance (oily skin, hair, night sweats....), worsening asthma, amongst others. After a trip to a&e with pelvic pain I was referred to gynae and eventually had a lap

almost a year ago. Gynaecologist removed adhesions and only lasered one small bit of endo from a uterosacral ligament. Since then the mid cycle pain has gradually worsened each month - this month I had bad sciatic pain that lasted a full week. When I mentioned the mid cycle pain at my follow up review six months after the lap it was dismissed as being something “some women have” but I know a full week of severe pain isn’t normal!

I think my endo was perhaps deeper than realised, but could all my other post-pregnancy issues also be linked to it, in particular the acid reflux and the weird hormonal issues as they’re both severe? I’m on a waiting list for an endoscopy for the reflux, and my gp has done basic hormonal testing (estrogen levels strong apparently so she ruled out peri-menopause).

I had more (unsuccessful) fertility treatment last summer and during it was the first time in years that I felt like my old self - hair improved, and so did my PMS- type symptoms. I should have felt worse during it but it was the opposite! I just don’t know what to do next - any advice would be greatly appreciated!

[Penelopeel]

Hi there

Well the pain is most likely endometriosis. It can cause severe pain anytime it likes. The reflux symptoms could be endometriosis once they have looked inside you and excluded anything else but it could just be plain old reflux. Do tablets like nexium help you?

You can develop acne anytime. It can be related to high androgen levels ( testosterone) or to certain memdications. But also if you are stressed and run down it probably gets worse. Can your Gp suggest good topical treatments for your acne?? It’s hard if you are trying to conceive as the pill would fix your acne and help manage your Endo pain. Maybe being on the pill for years fixed your acne and suppressed endometriosis and now you have stopped the pill you are getting the Endo and the acne?

Not much of a solution I know! It can completely consume you worrying about the pains and all the wierd symptoms. Take care and good luck with everything.

[kjs81 in reply to Penelopeel]

Thanks for your reply! I think the reflux is hormone related as it’s worse during certain points of my cycle. Over the counter stuff doesn’t work when it’s bad, nor does the lansoprazole I’ve been prescribed .

I don’t actually have acne, just very oily, ‘shiny’ skin, occasional mild breakouts but that’s it. Thanks again for replying!

[Jojo19732012]

Good morning. Sorry to hear about your pain.

I suffered with long term Endo problems for over 15 years, but sadly I chose to have a Total Hysterectomy last October and have been pain free for 12months. The menopause is taking a lot of getting used to, but at least I am not taking pain medication like a mad woman any more.

I suffered with acid reflux/chest pain/asthma symptoms also. I was sent for an Endoscopy, and the findings were severe scarings from recurring peptic ulcers, in my stomach and duodenum, also a 3cm Hiatus hernia, the specialist advised me that this was from all the pain medication I had taken over the years for my Endo. He explained that the rolling Hiatus hernia can also cause a lot of discomfort due to the stomach rolling in and out thru my oesophagus, which causes terrible acid reflux too. I don’t touch any form of Ibuprofen products at all. I was told to sleep with my head raised slightly at night and given acid reflux meds for six weeks. I worked with a food nutrition lady from my local community who has since taught me to make Kefir. I drink one small cup and take a super strength probiotic 50 billion (30billion is the minimum most people are told to take to improve gut health) every morning. I would say it was a good month before I started to feel better but I am now reflux and pain free. I really wish I had known more about the importance of gut health before all the pain meds I used to get me thru my day. Hopefully you will get a diagnosis soon. Wishing you well x

[kjs81 in reply to Jojo19732012]

Thank you - am glad to hear you’re feeling better now. Probiotics are probably something I should take, they can’t do any harm!

[kjs81]

I know Linda - at the time of writing this I wasn’t sure if I’d get a further response as I know you’re busy. Thanks again! X