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Endometriosis UK
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Endo WITHIN fibroid hormone treatment menopause with hrt offered

Hi all

My endo saga continues... Just been to see the gynae after having 2 mris & and CT scan so they could figure out what was going on. It had all got very scary. I was originally told I have severe endo throughout my pelvis, then that I had a cyst behind my uterus and but today I've been told that I have endo within a large (12cm)fibroid that is sitting behind my uterus. Like, between my uterus and 'back passage'. He said the endo is contained within the fibroid and is not cyst as they first thought. He is confident it is maligned. He said it's very unusual and complex presentation which is why it took so many scans and they were all very puzzled by it. He said I don't have endo elsewhere and apologised I was told this and said it was because it was a non gynae radiographer looking at a bone mri but now they've had more specific scans, and the endo & gynae team have reviewed, they can now see what it is. He said it's just very unusual.

He said as the fibroid is growing from my uterus, surgery would be complicated and could risk hysterectomy so his preferred treatment is to do chemical menopause. He didn't say the name bit said it would be one injection lasting 3 months and I would get this twice, so covering 6 months and I would take hrt at same time to minimise symptoms. He said the aim would be to shrink the fibroid which he thinks would reduce my symptoms. I hate the idea of chemical hormones but also hate the idea of surgery and want my life back so I feel I've no option really.

I'm very disabled by my symptoms, mostly chronic fatigue and back pain bout I also get a lot of abdominal pain and some gastro symptoms.

Any advice on this would be much appreciated.

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Hi,

Im so glad that you have found out what it is and have a diagnosis which isn't the big 'C' that you were worried about last week. 😊

Ive been in chemical menopause for about 3 years now. I have Prostap injections every 3 months. I have had time without HRT but currently I have a mirena coil in for progesterone and I have oestrogen patches. Personally, being in chemical menopause makes my symptoms so much better but they are still quite bad. Just 2 weeks ago my gynae stopped my menopause injection as im still debilitated from pain and he didnt think it was working, 4 days later I was in agony having to take twice as much morphine so went to see him as an emergency and he said that it was clearly helping my pain considerably but for me it does still leave a lot of pain.

I think you do also need to consider fertility and I would ask what happens after 6 months? As although it might shrink as soon as you stop it might grow again?

Love nd hugs. Xxx

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They said after 6 months, they'll repeat the scans to see if it's shrunk and then review my options.

I'm 40 (today) and haven't had a family. I'm so ill I couldn't possibly manage a child so it's not even been a consideration. If I get well again, I may feel differently and so may want to try but I'm not 100 % sure if it's what I want for my life. My focus is really just on getting my own life back. I'd 100% chose to have a hysterectomy to get rid of the fibroid if it was the only way to get better as I'm not having a life just now.

Do you mind telling me what your symptoms are? I think as my endo is quite unusual, I only get quite specific symptoms, with no bleeding issues or periods related problems. It's mostly fatigue and back pain for me. It's totally debilitating though.

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Ahh right ok that makes sense.

Happy birthday for today!!!

I dont mind at all. My symptoms are heavy and long periods that are irregular, acne, low mood round my periods, bowel troubles on period, cold/flu symptoms before my period and painful periods. These have all been fixed with menopause as I have no periods. I also used to get very bad pain during intercourse or even when using tampons which doesnt seem to have gotten any better so I simply do neither. My symptoms at the moment are fatigue and pain. The pain is currently disabling and is the main problem to be honest for me. Its constant and then gets worse on standing or sitting also worse when going to the toilet. I get pain in my pelvis which is left sided and at its worst when i put weight on my left leg like fires all round my pelvis like electrical shocks.

If you want to know anymore just ask. 😊 xxx

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Ohh I should also add that I was diagnosed with a small fibroid in january aswell as having endometriosis.

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I would say welcome to the fibroid club but personally it’s not a club anyone or myself would want to be in. I’m glad you finally got to the bottom of the problem, now you can ease your mind a little.

The injection I believe is Postap. It’s an artificially induced menopause drug . The idea of having this is to give your body a rest from it’s cycle, reduce estrogen and try to shrink the fibroid.

I’m on it now to do the same and to reduce the bleeding in my next op. I can’t say my symptoms have improved I’m still the same, full of pain and fed up.

You may also find you experience reactions from the injection like migraines, joint pain, cold and hot flushes but I hope you don’t have to go get them, it’s highly annoying and messes with your mood.

What’s your diet like? Look into low estrogen and low inflammation foods they may help you during this period and beyond.

I wish I had a magic wand or one wish to eliminate this for everyone.

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Well I already knew I was a reluctant member of the fibroid club but was told 2 years ago when they were found, that they did not cause any symptoms as they were outside the womb (I don't have any bleeding related symptoms) so now I'm being told as one contains endo, it is causing my symptoms. It's really confusing.

My diet is pretty good, I'm vegan and had been following a no sugar, soy, alcohol, processed foods diet for the last 3-4 months but its made no difference at all, in fact my symptoms have got worse. The past week, I've been eating more gluten and sugar as I've been basically worried I was going to die so I just thought what the hell. It's also my 40th birthday today so I'll just be eating anything and probably drinking too but will go back to the hormone diet after my birthday blow out. Even though I don't notice a difference, I know it's probably the best thing for me. My hope is that I stick to that and do the menopause thing and afterwards my body will be more balanced and can keep itself right (I'm probably being very optimistic!)

I really hate the idea of the chemical menopause but I think I'll have to try out as I've no other options. That's rubbish you have such awful symptoms. Do you take hrt as well? I've been told I'll get a low dose oestrogen to help with side effects but not enough to counter the effect of the menopause drug.

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Birthday celebrations are a must especially when you’re going through so much you need to a little fun.

We all worry and deal with it in our own ways. I push some thoughts away and deal with what I have now; otherwise I’d have no hair! I recently cut it as a result of dealing with pain and being frustrated🙄, I was very scissor happy.

I know what you mean though, I just want to tuck into a big bowl of pasta so don’t be too hard on yourself!

I don’t notice anything major by eliminating certain foods but like you I’m doing what I’m told.

With the injection - I had refused having it right back to my first diagnosis for endo years ago; I’m 36 with no children and I didn’t want to tempt early menopause. This time round everything is far worse and I just though I’ll try anything; when you’re desperate you’re desperate! I’m not on HRT, I’m a docs worse nightmare; I don’t like taking medication especially hormonal medication it will worry.

Happy Birthday 🎂

It’s mine tomorrow 😃, not too happy about being 37 though lol.

Enjoy your day, have some fun and then go back to this pain in the backside diet next week.

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Hi, what an ordeal for you and a roller coaster of emotions. I'm not diagnosed but have been having prostap as a determiner for gynae's next course of action. First 6 weeks were pretty grim but then it started to level out a bit. Now positives are pretty much mostly outweighing negatives and what it was like before starting it. I've requested a few extra months as my follow-up gynae appt was delayed due to waiting lists, so it must be more positive than negative for me to have decided that. I've requested the HRT this month as I'm about at my limit with hot flushes and night sweats. Everyone reacts differently and lots of people seem to cope quite well with it, and if it does the trick with the fibroid I think it'll be well worth it. Let us know how you get on X

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Thanks for replying. You must be a rock star for tolerating those symptoms and it's great you're getting some benefits now.

My main concern is that there's no plan for after the 6 months. It's pretty likely it will grow back once I stop. It just feels like a sticking plaster.

I just feel there's no real good option. I'm looking into natural approaches more. I'm just hoping there is something that will actually give me a longer term improvement in my quality of life.

Is a bloody awful disease.

X

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Aw yes, that must be a concern if no real plan after that. It's so hard to research and get good answers too isn't it, like the woman on the podcast said it is still quite a mystery, so variable woman to woman and across a life span. Recently at a breast clinic appointment (had developed very lumpy boobs over the last few years) the doc said that being on prostap can reset hormones for some women and it could continue to bring me benefits long after stopping. My boobs are definitely less lumpy and the awful soreness I was getting from them 2-3 weeks a month has stopped almost completely. I've been looking up and trying to research estrogen dominance recently which includes cystic breasts and lots of the symptoms I get and first thought was possibly early menopause. Endo comes under this too. Might be worth a research? I wonder if the prostap would work quite quickly in shutting your cycle down and hopefully stopping the fibroid in its tracks, possibly reducing it and then you could look further in to more natural ways of keeping your estrogen and progesterone in the right balance, if this is what's helping to cause it. And anything good you find let me know! 😘 Xx

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I've got lumpy breasts too! I've had quite a few lumps checked over the past 10 years and they've all just been 'lumps'.

I thought that about the prostrap too, that I could use it as a 'reset' and then do the natural stuff afterwards. Bit the more I read about the alternative approaches, the more I feel I want to try that first as I feel I'll have a bit more control over it than the injection. Then if it's not doing anything, I can then get the injection. I've got my follow up with gynae in Dec so I'm thinking I'll try the natural stuff until then, get the ultrasound and see if anything changes, along with monitoring my symptoms and if it's not doing anything positive, then I'll go for the injection.

I was thinking I'll maybe keep a blog to help me document it all. It'll help me bit could maybe also help someone else thinking of doing it.

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Sounds like you have a bit of a game plan for what must be a very difficult time. I think the blog idea is great and I know from your previous posts you've managed well on researching and doing lots to bring about positive change in your life so have every faith you'll give it a damn good go. With it being Dec before making a decision you've got a bit of time to play with like you say. Best of luck and will keep an eye out for updates X

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