Suspected Endo

[Hunt1610]

Hello, haven’t posted on here before but been reading through a lot of posts this past couple of weeks. After years of suspecting I could have Endo I went to the drs a few weeks ago, who referred me to a gynaecologist. I had my appointment this weekend and had a transvaginal ultrasound, which didn’t show any Endo but that my uterus is tipped, and she said she felt I was quite tender. She suspects Endo and wants me to have a laparoscopy and at the same time the Mirena cool fitted. I’m not a fan of hormonal contraceptives and only lasted on the pill 2 months as it triggered depression. Having done some reading of research into Mirena I’m not convinced that it wouldn’t trigger depression. Has anyone else had it fitted who’s susceptible to depression/anxiety? Think I’m also just worrying about the laparoscopy too incase I go through it and they don’t find anything. Sometimes I feel like my pain isn’t bad enough after reading other posts. Have suffered with ibs since my periods started (14 years ago) and painful periods for first 2 days, out of 6/7. Ovulation pain, painful sex, sometimes my bladder goes into overdrive, and this weird cramping pain I get 10 mins into a jog, and lower back pain. I think I’ve just lived with it so long that I’ve normalised it, and learnt to get on with my life in pain, but it’s not all day everyday. But my ibs means that everyday there is pain - especially after eating, and evenings spent looking pregnant. One thing I know is that the physical pain of Endo is not as bad as the bouts of depression I’ve had, so if refusing the Mirena means painful periods etc but better mental health then I would take that. Not sure what I’m trying to get across, so sorry for the essay, think it might just help to get my feelings written down.

[Thecraftyadder]

I had a similar history to you. Years of undiagnosed pain, fatigue and back issues. My previous attempts on the combined pill culminated in depression. It took 8mths to get myself back to normal after I stopped. I was diagnosed with endo during my lap in November and was pursuaded to try the Mirena. I get the theory that a localised low dose shouldn't cause as many side effects. For some women it's great. Sadly it did work for me. I found it very painful and ended up going down hill with anxiety and depression. After 9.5 weeks I got it removed. Fortunately the side effects have lifted within a few weeks this time. I feel I can cope better with pain when my head is together. My surgery has helped my pain levels to. Obviously only you know how bad your depression gets but don't be pushed into something you are unhappy with. If you decide to try it make sure someone close to you is aware of the possible side effects and keeps an eye on you. Also get your GP or someone to promise immediate removal if you start to suffer mental health issues because some seem to push you to keep trying it. My GP had already agreed this prior to my surgery. All the best with getting a diagnosis

[Hunt1610 in reply to Thecraftyadder]

Thank you, sorry to hear about your experience with the Mirena coil, it sounds like you made the right decision getting on removed. I think my gut is telling me to avoid it, then a little voice is saying I won’t actually know unless I try it. It’s good hat your surgery has helped too, have you seen a reduction in ibs symptoms since the lap?

[Thecraftyadder in reply to Hunt1610]

Initially they were bad after surgery. I'm sure the mirena made them worse as I was suffering daily nausea and shooting abdominal pain when I had a bowel movement plus looser stools. I've managed to get on top of most of my IBS issues over the years with diet: no a1 casin dairy (cows milk, - sheep and goat products are ok for me), no gluten. And I follow some principles of the low FODMAP diet (I spent about 6 mths under the care of a dietitian who helped me with the last one). Basically I just suffer during period time with diarrhea usually. However I'm on my first proper period since having the coil out and I'm just starting issues now on day 3 which is no doubt a side effect of the pain relief. So yes I think the surgery must have helped because I'm usually bad way before now. I had daily abdominal, hip and right leg pain prior to surgery which has improved loads. Low back ache is my worst symptom now but one of the ligaments to my lower back is where the endometriosis was and its got scaring on it to so I don't imagine that there is much that can be done about that. I find pilates good for keeping mobile though.

[SimplyMF]

Hi,

I’ve just read your post and my story reads very similar to yours. Years of IBS symptoms which were for years the blame for all if my abdominal pains. I also don’t suffer daily with what I would consider endompian but with bowel issues and fatigue.

I was advised to try a mini pill before the mirena as I’ve had unpleasant side affects to hormone pills before....a few days in and I was miserable, spotty and had a permanent headache. Within a few days of stopping my symptoms eased so I have decided that I will manage the pain without the use of anything hormone related.

I was interested to read you said your uterus is tipped, had it always been this way?

I have my diagnostic lap on the 25th and am so nervous.

My gynaecologist also noted at my appointment painful areas which she believed to be adhesions and that I have a retroverted uterus (mine had always been forward facing).

I hope you figure something out, my gp advised me that a pill was easier to stop than having to have the mirena out?!

Perhaps book an appointment with your GP to discuss your concerns.

Good luck!

[Hunt1610 in reply to SimplyMF]

Thank you, I am always fatigued as well, but never thought about that as a symptom. I’m not sure about the uterus, I’d never even heard of it before until she said it during my transvaginal ultrasound that it’s tipped and about 20% of women have one. I should have asked more questions about it but didn’t. However, have read that Endo can cause it to be tipped. I’ve always struggled with inserting even tampons though so I presume that’s maybe why. From what I’ve read about the Mirena too it’s the progestogin that can trigger depression and maybe it’s better to have a pill with more oestrogen. But i’d also rather just manage the pain without anything.