Fed up : Hi I’m 42 years old have stage... - Endometriosis UK

Endometriosis UK
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Fed up

Miss1976
Miss1976

Hi I’m 42 years old have stage4 endometriosis adenomyosis , fibroids and numerous cysts with periods that mean I have to stay home due to the amount of blood / clots lost . I’m currently on zoladex and norethisterone I’ve had a 7 day break from the norethisterone and started it again yet I’m still bleeding 3 weeks later and docs don’t seem to give a crap ! Never had this problem before with the norethisterone it usually stops it within days ! Any ideas ? Xx

8 Replies
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Hi, sorry to hear you're in so much pain/trouble. I have a friend who's 40 and had been going to the exact same thing. They fitted a Mirena coil and her bleeding eventually stopped and even though she still gets her periods she doesn't experience such heavy bleeding anymore. My doctor said the coil also helps reducing endometriosis so you might want to have a look into that.

You're not alone in this. It's depressing to see how many women are going through this but I have faith one day we'll beat this. I'm 35, I have stage 3 endometriosis and currently I'm on Prostap. The last couple of months have been a living hell due to the adverse reactions to the medicine (mood swings, pain, hot flashes, nausea, etc), but I'm fighting it and I'm sure I'll beat it again.

Stay strong and take calcium and Vit.B12 as it helps with the blood loss. Xx

Thankyou for your support 😊I’ve been to see the consultant several times and they won’t give me the coil due to my blood clotting disorder .He’s offered me surgery on jan 31st to “see what they can do “ but it’s severe so he may be able to do nothing . Hasn’t offered me a hysterectomy though and after much thought I think it would be a better option . I’ve had hot flushes with the zoladex but that’s it ! I’m Just utterly fed up with it dictating my life and job it’s my kids that suffer too as I’m limited as to where I can go and what I can do and it’s not fair on them xx

Sorry to hear it's so complicated. But, you're so lucky to have kids!

Diet helps tremendously with improving the symptoms - stay away from alcohol and sugar , though red wine helps improve the circulation and reduces the pain!

Good luck with the surgery! I'm sure they'll be able to clean you up a bit and that will also improve the symptoms. I know it's difficult but keeping busy and doing a lot of exercise (even though it's painful) will help with the symptoms on a long term. And yes, hysterectomy will be the answer in a few years. Just hang in there! Xx

I am so so lucky to have my children and all 3 help me out so much when I’m feeling rubbish !!theres so many people struggling to conceive and I do feel for them I’d be lost without mine . Is there any particular diet to follow my stomachs so all over the place at the minute I never know whether to eat or not . I enjoy the food when I eat it it’s just later when it makes me feel ill . I’m quite active we have a pony so have to go and see to him whether or no and I run my own business it’s the bleeding I suppose that really gets me I feel so drained and it’s just embarrassing when you stand up and bleed everywhere 😳. How do you cope ? Xx

Yes, you're not lucky you're blessed to have your children! I lost a 7 year marriage because of not being able to conceive (not the only reason but it contributed too).

The bleeding needs to be sorted out by the doctor. It's very serious and you should insist they do something about it. Take lots of iron and vit B to compensate the blood loss.

I've recently started getting sick after eating too so I discovered wheat doesn't work for me as it irritates my stomach. Wholemeal is better. The easiest way is to go on a diabetic friendly diet: no sugar (or considerably reduce it), less red meat- more fish, no milk - but eggs and cheese are good, less coffee/caffeine, lots of fresh vegetables and fruits but here you have to see which work for you and don't bloat you. No alcohol - I know it's hard but it's worth it! Type in the search box "endo diet" and there will be many results and you can adjust your diet accordingly.

Take care xx

If I were you I would either:

1) Get a hysterecromy + take dienogest (such as Visanne) instead of norethisterone

2) Simply take Visanne.

If you have a blood clots you need to start the Wobenzym supplement on the first day of your period, one pill a day for at least 30 days, preferably 40. You can take it with visanne or any other pill/birth control with no issues.

In the meantime, start with an anti-inflammatory diet immediately.

Whatever you choose to do, DO NOT interrupt the assumption of hormones EVER (7-day interruptions are NOT for women who suffer from endometriosis, who can take progesterone-only pills for over a year with no interruptions nor side effects).

PLEASE listen to what I've said or ask a specialised endo gyno at least, if you want to see any results: you cannot go on with everything you have! You risk a cyst rupture or worst!

Miss1976
Miss1976
in reply to StefaniaJW

Hey . I’ve asked for a hysterectomy yet I’ve been refused . Any ideas why ? I only had norethisterone break as that was what I was advised to do to be honest I’m fairly new to this endometriosis thing but the more I read the more I see it being mismanaged and cannot understand some of the decisions made by gynae docs . Is visanne available in the uk ? I’ve no idea . Xx

StefaniaJW
StefaniaJW
in reply to Miss1976

Visanne is not available in the UK, you're right (I apologise, I am from Italy, where it is available). A break when taking the pill would not be advisable considering your case anyway. It shocks me they refused you an hysterectomy yet didn't give you a reason as to why. Are you seeking a pregnancy? Also, it sound like your OB/GYB is not a specialised endo surgeon. I have to encourage you to seek a specialised endo gynecologist and only be followed by him/her for all gynecology-related issues (could it be laparoscopy/hysterectomy advice or what pill to take or anything else really). A normal gynecologist knows about this stuff as much as you do and won't be able to help you overcomes your issues. I cannot stress this enough: only a specialised professional can help.

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