hi sorry it’s me again … I’m worried abou... - Endometriosis UK

Endometriosis UK

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hi sorry it’s me again … I’m worried about taking estrogel

Sara0102 profile image
27 Replies

hi there anyone had estrogel? I’m 31 and was I am currently on prostrap injections for endometriosis but now they have given me this gel to rub on my arm … I’m worried about any side effects pls pls pls any advice would be helpful…

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Sara0102
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27 Replies
Addy2016 profile image
Addy2016

hi I’m taking estrogel it has stopped my bleeding but unfortunately not my pain 😩 I’ve had my MRI results back and I’ve got endometriosis in my pelvic ligaments, I’m in agony. As for any side effects I haven’t had any except weight gain 🤦🏻‍♀️ hope this helps

Sara0102 profile image
Sara0102 in reply toAddy2016

Thanks yes it has helped.. how old r u if u don’t mind me asking please and did u have it coz if the injection ?

Sara0102 profile image
Sara0102 in reply toAddy2016

Also after how long did it stop ur bleeding

Sunset-lady profile image
Sunset-lady

I'm presuming it's addback HRT to protect your bones and also to help your mood as prostrap puts you in menopause and without HRT it can be tough. You need progesterone too unless you have the coil. Don't worry - it will help just keep an eye on pain and bleeding and the ratio between progesterone and estrogen needs to be right for endo. We usually need more progesterone than estrogen. Good luck x

Sara0102 profile image
Sara0102 in reply toSunset-lady

Hi hun thanks for that.. yes it’s for my bones and mood.. I had the injection on Wednesday just gone and I started my gel today.. I just had my first 2 pumps I applied 1 pump on each inner thigh…

Yes I have the coil in.. I have been bleeding since 18th June and I am so fedup with it I’m literally sat here crying I cannot take this no more …. ☹️☹️

Have u ever had these injections ?

And sorry to ask but have u had prolonged bleeding ?

Sunset-lady profile image
Sunset-lady in reply toSara0102

So sorry you're dealing with this. I was bleeding heavily for nearly 18 months when they put me on zoladex which is very similar to Prostrap. I was anaemic and needed iron infusions as I lost so much blood. I have stage 4 endo and fibroids and adenomyosis. Zoladex has been good for me. I've bled much less and I've been able to get my life back. I'm on HRT too but be careful with estrogen as it drives endo. We need it but not too much as we are already possible estrogen dominant. There are many menopause symptoms which I'd google if I was you just to be prepared. Some are well known like hot flushes but others are odd like your hair snapping. I'm 51 so was prepared for most of them. Good luck x

Sara0102 profile image
Sara0102 in reply toSunset-lady

Its an absolute nightmare .. I’m 31 and I jus want to feel normal for once it’s been 4 years I haven’t felt normal.. the mirina coil helps with the heavy bleeds as before it was heavy but now it’s light and very very long.. I have deep endo and adenomyosis also adhesions … I literally just had my first dose I applied 1 pump each to my inner thigh… maybe it’s the injection that’s making me feel so sad… I hope everything really works out for all of us in the end ❤️‍🩹

1Poppy1234 profile image
1Poppy1234 in reply toSara0102

I understood from reading that oestrogen accerbates endometriosis so it's not good. I've been reading about tibolone after seeing someones post on this it doesn't have oestrogen but has all the stuff you need to keep better with everything.

Sara0102 profile image
Sara0102 in reply to1Poppy1234

So if it’s not good why has my consultant given me it 😤😤😤 they said I need it for my bones coz of my injection .. I don’t think il be having more injections as it’s really playing on my mind.. I’m on a 4 weeks test trial thingy so Monday il call up and tell them I dont t want more

Lindle profile image
Lindle in reply to1Poppy1234

Tibolone doesn’t directly contain oestrogen but still activates oestrogen receptors.

1Poppy1234 profile image
1Poppy1234

I am on decapeptyl jabs I'm not on anything to help with it I'm on my second lot of six months jabs. Others have calcium tablets and tibolone to help. The decapeptyl has helped with the pain though thankfully but my teeth ache my joints ache and I'm tired. I can't understand that there is so much consultants and doctors that don't know what meds to give. 🙈

Sara0102 profile image
Sara0102

yeah the doctors jus test things I’m feeling really bad today I think it’s a flare up day or maybe side effects of the medication etc I have been having …

Escapologygirl profile image
Escapologygirl

I was on 2 different rounds of decapeptyl injections and both times they did nothing for me except turn me into a depressed crying bloated overweight maniac, I refused to have any more of them after my gp saw me 2 days after I'd gotten the last one and he was shocked at how I looked and felt. I went through hell while they wore off and cannot understand how consultants are still prescribing theseI'm 46 now but I was on them at 40 and 44 and the side effects far outweigh any benefit these injuries are super to give

I wish you luck and hope you're ok

Sara0102 profile image
Sara0102 in reply toEscapologygirl

I don’t think il have anymore either! I feel shit and crap I feel crap as it is so it’s adding more to that 😩

Escapologygirl profile image
Escapologygirl in reply toSara0102

I know exactly what you mean and it's your body so only you truly know what is right for you, its so sad that in this day and age we are still not getting decent treatment. Hugs

Sara0102 profile image
Sara0102 in reply toEscapologygirl

♥️♥️ thank you ..

Yes 2024 and still suffering us women are ☹️

Sunset-lady profile image
Sunset-lady

Estrogen can exacerbate endometriosis but you may need it for your mood. Tibilone will help with bone mass but not mood unfortunately. Lots of women take estrogen on these injections but it's all about finding the right balance. Just enough to keep your sanity and protect your bones. Two pumps may be too much but you can always reduce it. The progestin in your coil will help the bleeding but it's not real progesterone (its synthetic) and won't help your mood. If you take natural progesterone that will help (like utrogestan) but then you may bleed more. It's trial and error- everyone is different. Some women do well on Tibilone whilst others find it gives them no relief from the menopause symptoms. Zoladex and Prostrap are very different drugs if you take HRT. For heavy bleeders they are a life saver.

Flewks profile image
Flewks

if you have only just had your first injection it’s known to cause a flare up the first 3 weeks before they start to help as it causes a surge in estrogen they say before everything shuts down. You shouldn’t take HRT until at least the 2nd injection, my endo specialist starts you on the injections to see if they help then adds in HRT after about 3/4 months to help protect bones. If I hadn’t done it that way I would have come off them which would have been a massive mistake as the injections have been amazing for me I’m on pro stap, soon as I started trying to add in HRT after 4 months they caused issues and brought back pain and bleeding after the injections stopped it all. We have decided to keep me on a lower dose of HRT as I’m only small so I’m doing one pump of estrogel and taking progesterone separate. With you going in full whack with injections and 2 pumps I’m not suprised you are suffering especially in the flare up stage 😰 xx

Sara0102 profile image
Sara0102 in reply toFlewks

Omg u are god sent .. yes I am having a flare up! Bright red blood back ache and cramps bad.. my pubic bone is even hurting me !!! They said I have to take it for my bones I have 1 pump on each inner thigh so 2 in total… I’m acc dying today… so it’s normal to have this? I don’t think I’m having another injection I feel spaced out and weird

Sara0102 profile image
Sara0102 in reply toFlewks

I may even start having 1 pump to be honest and I’m bleeding bad and I’m feduo of the bloody ordeal as it is

Flewks profile image
Flewks in reply toSara0102

Are you from the UK if so there’s a good endo FB that explained it really well “endo revisited” and says it’s very common to have a flare up first before it all settles, my specialist told me the same. I had a bad period 5 days into my first injection painful etc and I worried if I’d made a mistake but it’s now the best decision ever and given me my life back! But the HRT is tricky to find the right dose without it triggering bleeding. It will be hard for you to tell if the injections help with you already being on the estrogel 😰 but very common for you to be all over the place at first it’s a huge shock to the body especially injections + estrogel!

Sara0102 profile image
Sara0102 in reply toFlewks

I’m so glad it’s normal I thought I’m dying.. yes I feel like I’m on a BAD periods and I’m bleeding and also bad cramps along with back ache and vaginal cramps.. does that sound about right ? Tomorrow I think il try 1 pump and then Monday il phone the secretary …. Il go and have a look on fb I need some Propper advice to put my mind at ease .. I’m so so so glad for this wider community.. don’t know where I would be without you all♥️♥️♥️♥️♥️

Flewks profile image
Flewks in reply toSara0102

I mean wouldn’t use the word normal 😂😂 but normal for this process 😣 but if your instinct tells you somethings seriously wrong of course go get checked! Hopefully should all settle down though I’d say it takes a week to notice the difference of lowering your dose to one pump that’s what it took for me. Definitely worth phoning the secretary too! It helps so much to have this and the FB groups etc I’d recommend joining as much as possible 😊 x

Sara0102 profile image
Sara0102 in reply toFlewks

yes I mean for this process 🤣🤣🤣🤣 … thanks for ur reply’s x

Easterbunny1 profile image
Easterbunny1

I have had two prostap injections. Been offered it before but refused as scared of side effects. This time had no choice as waiting for robot assisted surgery and this is part of the prep. I was on the combined pill to control my symptoms, so this was a big change. I insisted on Tibolone from the start. First month was tough. Mood swings, pain, terrible headaches, brain fog, trouble sleeping etc. Now it seems to have settled. I am a lot more achy and my right hip is the main place. Weight gain has also been a battle. I have found changing to a high protein and low carb diet has helped. Prostap has also controlled my symptoms and pain enough for me to start running and doing HIIT classes regularly. This has in turn helped with my mood and weight gain. I have stage 4 deep infiltrating endo with severe intestine damage, hence the surgery wait. I spent a week in hospital with a bowel obstruction in Sept last year so to be where I am in terms of symptoms and exercise feels like a miracle. Maybe the coil is the problem? I know I bleed like mad with progesterone only contraceptives and know lots of people who bleed excessively with the coil. It could be worth having it removed and using tibolone instead for HRT? I know how hard it can be when symptoms are bad and there seems to be no light at the end of the tunnel. This condition has taken me there several times over the last 10 years. Get back to the doctors and make it clear how bad you are feeling. Good luck and I hope you are feeling a little better soon. xxx

Sara0102 profile image
Sara0102 in reply toEasterbunny1

Aww thank you yes I am going for keyhole surgery aswell so il see how I get on in only having 1 more after this then I can decide weather I want it or not but tbh I don’t even want the second one I’m scared of new stuff going in to my body … I really hope I can feel better and it does show some affect

BloomingMarvellous profile image
BloomingMarvellous

Hang on - oestrogen is not all bad ! It’s a complicated picture and not everyone is the same not has the same phenotype of endo which means they develop differently. Oestrogen is also an anti inflammatory, essential for blood sugar regulation, Bp management, muscle and bone health , mental health well being and brain function. If you have too little you’ll be unwell. Two pumps is a very low dose. That’s why there is add back. Try reading the resources on The Balance Website and app from Dr Louise Newson to understand more on the subject. You are for all intents and purposes being put into a temporary menopause with the prostrap/ zoladex . That in itself will /can make you feel shit, so it may not be the Oestragel persay itself rather a combination of treatments that’s proving challenging .

Fear and lack of information are potent engines to create more anxiety and reflex poor decisions instead of trying to find the balance that’s right for you without the lens of worry and distress. Trouble is the Drs have a limited understanding because the research isn’t there and limited armoury to deal with the issues . Couple this with our pain and anxiety that naturally arises with ill health and the known effect of anxiety in and of itself and it can be a bit of a runaway train. I found the Curable App helpful in calming the storm and being able to be more able to manage treatments

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