Has endo come back due to taking HRT tabl... - Endometriosis UK

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Has endo come back due to taking HRT tablets?

Sweetyassi
Sweetyassi
46 Replies

Hi all,

I'm wondering if I have made the mistake of agreeing to take HRT tablets. I think my endo has come back now.

Sweety.

46 Replies
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Heloo85

When i was on Zoladex i could not take HRT because it caused my endo to flair. So yes, HRT can aggrevate Endometriosis

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Sweetyassi
Sweetyassi
in reply to Heloo85

Hi Heloo85,

Thank you for your reply. I did have doubts before taking HRT. I was told if I don't take them then my bones would suffer later in life.

Now I wished I had listened to my gut feeling.

Sweety

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Billybob9

Hi, I’ve recently had my ovaries removed due to endometriosis ( hysterectomy in 2016) and been advised to take oestrogen only hrt. The 1st question I asked my consultant after surgery when she advised taking hrt was would this not have an effect on endometriosis ? Her reply was no ???

Please keep me posted !

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Sweetyassi

Hi Billybob9,

That was the 1sy question I asked as well and was told and reassured that the endo will not come back.

Sweety

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Sweetyassi

Hi Billybob9,

I forgot to ask you if you don't mind answering me which HRT tablet are you taking?

I'm taking Femoston-conti. It has oestrogen and progesteren in it.

Sweety

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Billybob9

Hi, I’m so confused now I really had high hopes that this would be the end of endometriosis and horrendous pain... wishfull thinking maybe??

Of course I don’t mind I’m on Estradiol, oestrogen only as consultant/drs said combined is not needed as I had my womb (and everything else ) taken in 2016, they said combined only needed if I still had womb as this would stop the lining of the womb thickening.

Looking for any advice x

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Sweetyassi

Hi Billybob9,

I'm so confused as well, I have had a full hysterectomy done in 2011 then had both ovaries removed in 2017 I have had a look at my HRT tablets and it has both progesterone and oestrogen in it.

This is so confusing I really don't know what to do, if I should continue taking HRT or not. I have done some research and it says that even taking HRT endo can come back. Because there is no cure for it and no one knows how to treat it it's all trail and error.

Sweety.

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Billybob9

Hi, it might be worth you asking your GP? Mine definitely said that progesterone is only needed to prevent the thickening of the womb, honestly I’m becoming more frustrated with medical professionals and how they all seem to contradict each other.

Have you got any future appointments to ask advice ?

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Sweetyassi

Hi,

I have my gyno appointment tomorrow morning and next week I have another appointment with my menopause doctor. I really don't know what to do. The doctor say they know everything about endo, but how can they when there isn't a cure out there.

I have decided that for now I'm going to stop taking HRT and see how I feel. I will speak to both doctors and see what they say.

Maybe hrt isn't for me as I know no medication has helped me in the past so I wouldn't be surprised if hrt doesn't help me.

Sweety.

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Billybob9

Ahhh I hope u get some answers to tomorrow, I’ll be thinking about you and please let me know what they say x I hope I have made you feel more confused with what my dcs said it could be mine that are wrong ?? I haven’t got my follow up til February 2020.

I know what you mean about medication not working I was the same never really relied on painkillers as they either didn’t work or played havoc with bowel and stomach and implants and such thing helped a little but again not enough to use the long term or repeatedly.

I didn’t even know there was such thing a menapause Doctor? Have u been to see them before ? We’re they helpful ?

Keep me posted and good luck with your appointments

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Billybob9

Sorry just read my message back I meant to say ‘I hope I haven’t made you more confused’ rather than what I typed

So sorry 😐

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Sweetyassi

Hi,

That is a long time to wait to see a doctor.

I didn't know about a menopause doctor either. The one I am seeing is at Northwick park hospital she is the menopause expert.

You have reassured me that I'm not the only one who is doubting taking HRT and having problems taking it.

I will let you know what my doctor says to me.

Sweety

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Sweetyassi

Hi Billybob9,

Well it's been confirmed my endo has come back due to me taking the HRT tablets. My consultant wasn't happy that I was taking them and told me to stop immediately. I'm meeting with the menopause doctor next week, and I will her what my consultant told me and I'm not going to take HRT tablets anymore because my endo isn't like other women. I will need to look into foods that will help me with my bones.

Sweety

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Billybob9

Ah no I’m so sorry to hear that. Who advised you to take them in the first place?? I don’t know what to do now as after every surgery I’ve had it’s always grown back 😢 what did they mean by ‘your endometriosis isn’t like other women’ ?

I hope you get some answers from menopause doctor x

What’s the plan with endo ? Are u having more surgery ?

Take care

Reply
Sweetyassi

Hi Billybob9,

The menopause doctor told me to take it as it would help with my bones and got flushes. My hot flushes weren't that bad but I was worried about my bones so that's why I took and she told me that endo wouldn't come back, but obviously it did. I have been told that my endo is extremely strong and it keeps coming back after every operation I have had in the past but worse. My endo was inside my bowels and then inside my bladder, that's what the consultant told me that's why my endo is different from other women. And as no painkillers or medications work on endo for me.

I am definitely not going to have another operation, I'm going to refuse hrt and hope that without taking HRT that the endo shrinks and dies and stop altogether. I will start eating more foods that help with bones and I will go back to my liquid diet.

Sweety

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Billybob9

Sounds like you have a good plan.. seems like u’ve had a right time of it.

It was my consultant who mentioned my hrt and she write to my doc. I don’t blame you for not wanting any more op’s especially when it comes back.

I thought about my last ops and each time it seems to come back but twice as bad... 1st time was just a little bit found by mistake as they thought I had appendicitis.. 2nd time was 3yrs later 3rd time 2yrs later they said there was too much to treat and needed a hysterectomy but they recommended I see how long I could manage the pain and to come back if it was affecting my quality of life??? I lasted another 3 yr and had my hysterectomy. Consultant said he had cleared everything and it would come back ... 6 mth later it was back. When they went in this time myovaries were fused to my bowels then all stuck to pelvic wall MESSY!!

Can I ask how they diagnosed ur endo in ur bowel ?

Hope things work out for u, keep me posted 😊

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Sweetyassi

Hi Billybob9,

Oh dear you thing.

Well with me it all started with headaches for 8 months I had headaches every day and night. Then suddenly my period pains became worse, I couldn't cope and my insides felt differently not sure how to describe that feeling. I was turned away from the hospital 3 times because the doctors said "man yo it's just period pains " then my doctor gave me tramadol painkillers which made me constipated and I couldn't open my bowels for 2 weeks I told my hubby that I felt like I was dying slowly. He got scared and took me back to hospital because my skin had turned yellow and I couldn't eat or drink for 2 weeks I was vomiting and had bad hiccups. 4 th time at the hospital I saw a doctor and before he said anything to me I threw up and he asked me to do a urine sample but I couldn't I was badly dehydrated and he kept me in for 2 weeks. From this point I had eaten anything for a month or drank anything. I was still vomiting. After a month I was told to eat and when I did my stomach swelled like I was 9 months pregnant and was in agony they operated straight away and found endo inside my bowels which was blocked and had damaged my bowels so now I'm celiac. Part of my bowels was badly damaged and twisted due to endo. That how I was diagnosed with endo in bowels.

Sorry for the long post.

Sweety.

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Billybob9

Don’t be sorry, I feel for you.. there’s no such thing as a short message once you start sharing info on endometriosis.. I’m sure I could write a book.

Hope things really do improve for you. X

My bowels have really been affected too even after my op things havent really settled down in that area but then again I haven’t really had a great appetite so feeling a bit sluggish

Good luck with ur plans and keep me posted x

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Sweetyassi

Hi,

Thanks,

Ask your doctor to get you tested for celiac disease. Sometimes bowel operation can damage the bowels and then you have problems eating.

I have to go on a liquid diet for sometimes 3-5days depending upon how my bowels are feeling. I can't eat much solid foods since my very 1st operation which was a bowel resection. I eat solid breakfast and then its liquids throughout the day. That's it. That's all I can manage and it does help with my bowels and stomach pains.

Sweety.

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Sweetyassi

Please listen to your gut feeling. I ignored mine and now I regret it. I knew I shouldn't take HRT no matter what the doctor says. Any hormonal tablets can bring back endo especially if you have had it really bad like stage 4.

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Billybob9

Thanks, I will.. I think I need to have a chat with my consultant again??

I have been tested for celiac a few years back, had a spell under a dietitian where I literally couldn’t eat at all living on hot drinks until I lost nearly 2 stone ( I was only 10 st at my heaviest) then my mam had a shout at one of my appointments and they started me on high calorie drinks! I picked up a bit and stopped having them after about 4/6 mths then under a bowel specialist as they thought I had problems with the muscles that came to an end with no firm answers or results , I also had a test think it was a proctogram where the look at how I emptied my bowls .. again no answers ??? Fed up of tests one thing I do know is that I don’t love food I just eat it cos I know I have to🙁 they say I have I s so tried the fodmap first which helped a bit but was so hard to stick to being a working mother .

Hoping this last op will fix me but who knows ????

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Billybob9
Billybob9
in reply to Billybob9

Sorry about my typing errors ..* they say I have IBS and tried the fodmap diet

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Sweetyassi

Hi don't worry, message me as much as you like. I have no one to talk to about this. I haven't worked since 2009. I had every test done to see if I have celiac disease and every test came back as no, so I was suffering eating normal foods until I started eating gluten free and dairy free, soya free, red meat free diet and I found it easy to eat I had no pains . So I knew I was right it was the doctors who didn't believe me, I kept going back to the hospital having test after test until I had a DNA blood test and that confirmed that I had celiac disease. I had lost so much weight. I was under weight I was 7 stones. I can tell you this that weight gain or fatty foods have a bad impact on endo, endo pains become worse. I have IBS and I have to make sure I don't eat or drink too much fibre, I have recently diagnosed with fibromyalgia.

I never heard of different stages of endo either. I don't know how they mark them up in stages as everyone pains are different.

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Rorydog10

Hi ladies, sorry to interrupt on your thread and hope you dont mind me commenting.

Can I advise you both if your are not already on it to join Nancy's Nook educational group on FB. Alot of what you both have said in this post has raised major red flags. I think you both need to seek further specialist care than what you are receiving. X

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Billybob9

Sorry for all my messages ! Just thought of something else, at no point have I ever been given a ‘stage’ always just used terms like ‘very messy’ ‘really tricky’ ‘far too much’ ??

I’ve noticed lots of ladies mentioning a stage in their endometriosis

Reply
Rorydog10
Rorydog10
in reply to Billybob9

Hi ladies, sorry to interrupt on your thread and hope you dont mind me commenting.

Can I advise you both if your are not already on it to join Nancy's Nook educational group on FB. Alot of what you both have said in this post has raised major red flags. I think you both need to seek further specialist care than what you are receiving. Xx

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Billybob9
Billybob9
in reply to Rorydog10

Morning, no don’t mind at all x

I’ve heard a few people mention that site but unfortunately I’m not on FB

It might be worth me joining just for that. I’m just so fed up with all the promises that when we have the ops that will be it!! My consultant was pretty clear with her answer to my question and now doubting it 100%

I’m hoping that once I’m fully recovered from my op I do feel some benefits x

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Sweetyassi

Morning Billybob9,

I hope you do feel better after you have recovered from your op. I always do some research when I get home from seeing my consultant, especially when he or she has suggested something I should take. I have learned my lesson, always go with your intuition. You know your body, you know what's happening inside you, the doctor doesn't. They are just experimenting on us because they don't have the full answers.

Sweety

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Rorydog10
Rorydog10
in reply to Billybob9

It may be, I have an account purely for the group.

Now obviously I dont know your history but in a nut shell....

Hysterectomy does not treat endo (if you have adenomyosis then hysterectomy may be indicated)

Zoladex, the contraceptive pill etc also does not treat endo, it may mask symptoms but the disease will still progress.

Ablation does not treat endo, it's like chopping a weed and not pulling out the root, only excision will get rid of it completely and only if done by a true specialist.

A true specialist will be experienced in dealing with endo of the bowel, bladder and other extra pelvic areas, it is not rare and is not difficult for them to treat (I have this myself and also thoracic)

There is a list on the face book group of very experienced surgeons, a few do NHS referrals but there are obviously long waits. With NHS choices you can get a referral any where in the UK, some people pay for a one off private appt with specialist who will then write to your GP to ask for a referral to them.

Hope this helps xx

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Billybob9
Billybob9
in reply to Rorydog10

Hi thanks for the advice, my story is a pretty long one so I won’t bore you but basically I have no idea what has been done in some of my ops other than each time endometriosis was found but not sure how they treat it as the hospital seem to have lost my notes 😡😡so I’m in the middle of getting advice on where to go next regarding those. I don’t ever feel that I’ve been informed or supported well after any of my ops I suppose some of this has been my fault as I don’t like to question the professionals. Every time I was given a run down on how the ops went I was still under the influence of the drugs from the operation, discharged within hrs even after my hysterectomy and I didn’t take in anything they said I guess I was just relieved that I survived the op 😳

My last op which was my hysterectomy there Was no firm decisions about what they were going to do it was a lot of ifs and buts anyway they did remove it along with my tubes and cervix which came back as showing signs of cn3. Because my notes were then lost I was not recalled for the vault smears 😡😡 to make sure the cells had not spread.. fast forward 3 years which is to May this year which is when it all came to light when I had an appointment with a gynaecologist.. so basically I have been totally let down and just had my 1st test done 3 yrs to late and I have to be checked again in 12mths time.

I have lost faith in docs and hospitals a bit.

Sorry for long post but I feel I could go on and on and on x

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Rorydog10
Rorydog10
in reply to Billybob9

Sounds like you have some fairly bad experiences bless you, and possibly unnecessary treatment that could have been avoided.

I would definitely advise getting another opinion from one of the highly recommended consultants on the Nook list.

Good luck xx

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Sweetyassi

Oh dear, Billybob9,

You have had some pretty bad experiences. I hate it when the doctor comes to tell you what they did when you just wake up from surgery, how on earth are we meant to hear and focus on what is being said.

Maybe you should get another opinion.

Sweety.

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Billybob9

It’s so annoying. Yeah I’m getting in touch with PALS anyway about my notes so I’m going to ask for a meeting/appointment with someone within the hospital to raise my concerns and get things right in my head to what’s actually been done in the past inside this body of mine

I hope things work out for you x

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Sweetyassi

Hi Billybob9,

I hope PALS can help you.

I remember coming waking up from my last operation in 2017, I could feel pain but couldn't find out where it was, until a few hours later. The pain was in my right calf, my leg and foot was completely swollen and numb I was in agony, I had to have emergency operation, it turned out that during my gyno operation I developed compartment syndrome in my right calf. I had to spend 2 weeks in hospital and had 4 operation kn my leg. I spent 2 years walking crutches. I'm now walking with a walking stick and trying to strengthen my leg.

When signing the consent form on the day of your operation they should mention might develop compartment syndrome. I always read the consent form and it never mentioned that nor did the surgeon say anything to me about it.

Sweety

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Billybob9

How awful, That’s sounds horrendous. I’ve not even heard of it but sounds terrible. Did the hospital give any reasons to why this happened. No wonder you don’t want any more surgeries.

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Sweetyassi

Hi Billybob9,

I was told that it sometimes happen to people in long hours of surgeries.

Sweety.

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Sweetyassi

Good morning Rorydog10,

I don't mind you interrupting our conversation, I think all women should report any symptoms or feelings to other women so everyone is aware that it could happen to them.

I am on Facebook but I hardly go on that as I mostly go on Twitter. I will make more of an effort to go on Facebook now.

1 like
Reply
Rorydog10

It may be, I have an account purely for the group.

Now obviously I dont know your history but in a nut shell....

Hysterectomy does not treat endo (if you have adenomyosis then hysterectomy may be indicated)

Zoladex, the contraceptive pill etc also does not treat endo, it may mask symptoms but the disease will still progress.

Ablation does not treat endo, it's like chopping a weed and not pulling out the root, only excision will get rid of it completely and only if done by a true specialist.

A true specialist will be experienced in dealing with endo of the bowel, bladder and other extra pelvic areas, it is not rare and is not difficult for them to treat (I have this myself and also thoracic)

There is a list on the face book group of very experienced surgeons, a few do NHS referrals but there are obviously long waits. With NHS choices you can get a referral any where in the UK, some people pay for a one off private appt with specialist who will then write to your GP to ask for a referral to them.

Hope this helps xx

1 like
Reply
Sweetyassi

Hi Rorydog10,

I have had multiple operation to remove endo and adhesions but with each my endo came back more aggressive. No medication work for, no painkillers work at all. I've tried everything including seeing a private endo specialist who removed a lot of endo and adhesions that were infused to my bowels to bladder and both ovaries and inside my bladder. I had a partial hysterectomy done in 2011 and was told by a different endo specialist that hysterectomy would stop my endo, obviously that wasn't true. My last operation was in 2017 the specialist removed both my ovaries and I started my menopause. For a year I was fine which was a first for me. Then once starting HRT it all came back.

I have tried everything and anything and I guess I'm one of the unlucky ones where treatment doesn't work.

Sweety.

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Rorydog10

Depends if the endo was burnt off - ablation (it will come back) or cut out (excision) and if they got it all.

Everyone is different, but maybe you would benefit from seeing someone from the list on Nancy's Nook if you are not having much luck with your current consultant xx

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Sweetyassi

As far as I now it was lasered off and cut off. I have a strong feeling that the surgeon couldn't see all the endo as I have pains near my ribs but I don't think anyone checked there.

Sweety

1 like
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Rorydog10

I would definitely advise seeing a highly recommended consultant from the facebook group. Get another opinion and some better care. Get yourself on the group and hopefully there will be someone near to where you are based or not too long travel ( I have fo travel 2.5hrs to see mine)

Anything that was lasered off will still keep returning.

Good luck xx

1 like
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Sweetyassi

Hi Rorydog10,

Thank you for the advice I will definitely look for another consultant.

Sweety.

1 like
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Heloo85
Heloo85
in reply to Sweetyassi

Hi.

Can i ask how old you are? I like you am very, very sensitive to hormones. My Endo doesnt respond. It is aggressive, proven by biopsy. The one thing my Consultant has never suggested is a Hyster, which im glad cuz i wont have one! On zoladex i was crippled with menopausal symptoms, and as explained in my short post, HRT flaired my Endo. I have had 3 6 monthly courses of Zoladex, which i have been given HRT and tried it, but within a week it has flaired each time so ive stopped! I have no idea why Drs still suggest a hyster as it isnt a cure for all. Some, maybe, but not us with aggressive endo. I just live with it! Eat a healthy balanced diet and stay active as possible as exercise can lower estrogen!

Wishing you the best of luck.

Kim

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Sweetyassi
Sweetyassi
in reply to Heloo85

Hi Heloo85,

I am 43 years old, but feel so much older. Sorry to hear that you are suffering.

I had hysterectomy a few years ago because of my endo, I used to faint so much, in so much agony, my periods were heavy and I was bleeding every day. I was told back then that once having hysterectomy my endo wouldn't come back. Well, that consultant was so wrong. My endo came back within a week of having the hysterectomy. I had both my ovaries removed in 2017 and went into menopause straight away. I was okay for 1 year, had a few issues with my stomach but nothing serious, until i was put on HRT tablets and my endo came back and my pains are horrible again. O have come off the HRT tablets now and have been told to go on another set of HRT tablets which I'm considering not taking as the side effects sound scary to me.

No painkillers or meds or injections work on me. I'm on my liquid diet as solid foods cause more pain. I do exercise when I can.

Sweety.

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