Endometriosis and Adenomyosis

Hi all,

This is my first time posting on here sharing my experience. Ever since I started my periods they were always very heavy and painful. After many trips to the doctors, I was always sent away and told to take pain relief to help with the cramps and discomfort and given transxamic acid for the blood loss. Ive tried many forms of contraception I.e the pill, coil to test whether it would help with my symptoms but nothing would ever work. After 5 years, my doctors finally referred me to a gynaecologist for further investigation and I was diagnosed with endometriosis and adenomyosis. I had laparoscopic surgery in May and haven’t felt any better at all. I’ve recently had another scan which has shown ovarian cysts which are causing me a lot of pain. I’m really struggling to get on top of the pain and to not let it get in the way of my everyday life. I feel so poorly all the time from my blood loss and from having to live with these horrible conditions. I currently have the mirena coil insitu again to help with the endometriosis symptoms but I’m feeling terrible. I’ve seen my consultant again but I feel like I wasn’t give much advice or help. Any tips on how to manage the pain or symptoms of either endo or adenomyosis? I’ve tried numerous things but nothing seems to work. It would be good to hear back from you ladies as it may make me feel better about the whole thing knowing I’m not alone going through this and I’d be grateful for any tips/ advice on things which may help me. It’s getting in the way of my job and everything. I also have bad acne on my face from norethisterone hormone medication which is making me feel very uncomfortable about my appearance. I’ve tried various acne treatments/ creams and nothing seems to clear it up. I’ve looked into going private also but it seems to be very expensive. Has anyone gone private.. was it worth it? I’m thinking about booking a private consultation to get a second opinion. P.s - sorry for the very long post. Thank you

[AllthatGlitters]

Hello I have both adenomyosis and endometriosis too.

I paid privately for a laparoscopy as my NHS appointment was never coming through although they put me on the 12 week urgent waiting list.

I am currently on the pill which seems to work to a certain degree.

It has stopped the flooding through my clothes, I now have lighter periods although I take the pill continuously. I still get pain bad enough to go to A&E and be put on morphine.

Can I suggest that for your acne you could start a cleansing routine which may help you. I don’t know if I am allowed to suggest a certain brand on here?

Wanted to let you know you are not alone and PM me if you like xx

[Tothefuture]

Hi

I hope you are having an OK day today. I had diagnosis of aden and fibroids. Not stop bleeding for 6 months, iron anaemia and just an awful time of having absolute every med thrown at me by GP. Its pleasing to hear you have a diagnosis though. I went private due to a NHS gyno wanting to place another mirina coil in when I had already expelled the first one with such bad bleeding and clots and she had not even examined me !! . whilst private is expensive I received amazing care. From first exam, scans, biopsy, diagnosis and hysterectomy - a period of 10 weeks. in fact the hysterectomy was done two weeks before the NHS were able to even try and fit a coil !! I feel amazing aside from the hormone in balance we are trying to get right (my GP does not seem confident in giveng me estrogen, that's another battle!!). My consultant, who's profile is very impressive informed me that the only treatment/cure for adenomyosis is hysterectomy. Obviously your age and wishes for children will inform you whether you wish to treat the symptoms in the mean time. I am 48, 4 weeks post surgery and have a future , I have no regrets . regards Kezyt

[Romano1234 in reply to Tothefuture]

Hi, what were you symptoms with adeno as I have pain all month especially back pain! Ovary pain. I don’t have a period as I’m on a pill that stops them as I was bleeding bad however the pain is really bad so wondering if this is similar to what you experienced? I’m wanting a hysterectomy. Did you have everything removed or just your womb? Thanks