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[flashbambi]

Hi everyone

I've just come off HRT (Elleste Solo 1mg tablets), reduced dose gradually over around 3 months then stopped completely since approx 3 weeks.

Was on HRT since having full hysterectomy at 36yrs and now 50yrs so GP said I really needed to stop taking it.

Since stopping I've had strange phantom 'period pains' and have had to resort to taking painkillers most days for abdominal discomfort.  I've got no lady equipment  to give me these pains so am getting worried about what my innards are up to.

I just wondered if this is normal or if I should see my doctor?  It's difficult to get an appointment and I really don't want to waste their time.

Appreciate any advice

Thanks in advance

Joanne

[Hurdity]

Hi flashbambi

 

The good news is - you don't have to stop taking HRT (unless there is a good medical reason)! Your doctor is quite wrong and completely out of date. Any risks that there are do not even start to count until you reach the average age of natural menopause of 51/52 which you have not yet reached. Most women would be producing oestrogen of their own until this age anyway. Also you were on a very low dose.

Please go back to your GP or better still a different one in the practice, once you have read up about it, and ask to go back on it. Ideally you could have been on a higher dose at your young age because 1 mg oestrogen is not high enough to give the best protection against osteoporosis, and your risks of this are higher if you have a low BMI and small frame.

Look especially at the home page of this website - at the NICE Guidelines, press releases and links (scroll right down untuil you reach them), as well as websites of Women's Health Concern and their fact sheets, and the British Menopause Society - but this one is the best starting point.

Find out who are the menopause specialists at your practice, make an appointment and ask for HRT again! The risks associated with oestrogen only HRT are minimal anyway so there is absolutely no need to suffer. I didn't start it until I was nearly 54 and still on it 10 years later in my 60s - and I have all my womanly apparatus intact!

There are other members like yourself who either went into early menopause naturally or surgically and will also I am sure tell you their experiences.

By all means ask about your pains in case there is something else amiss but if it's gynaecological it could well be due to oestrogen deficiency. Sorry I can't explain the phantom period pains but your muscles generally will start to become lax as collagen decreases so this can affect your whole abdomen as organs start to drop a little....

Read up, ask around and we are here to help - good luck

Hurdity x

[flashbambi]

Hello and thanks so much for your response.

I think I'm going to have to see the doctor as these pains just aren't subsiding and I really don't feel myself.

That's reassuring that I might be able to stay on it a bit longer, it's difficult to know how I would have been without it but I defintely don't want to feel like this if I don't need to, but the GP was pretty adamant that I should come off now I'm at average age for natural menopause after being on it for 14 yrs.

I went onto a really low dose about 12 months ago when the GP started talking about coming off it at 50 as I was scared I might turn into Linda Blair (headspins and everything!) so it was my idea.  I hadn't really thought about all the physical side effects of coming off HRT, I hoped I'd just get a few hot flushes (which I have been having since having no HRT) and that might be the worst of it : /

I had a health MOT this year and they said I'm at very low risk of osteoperosis, so that's something.

I will read more on the forum, it would be lovely to find others who've been through similar, I'll also make a GP appointment.

Thanks again

Joanne

[Dancinggirl]

Hi flashbambi and welcome
I am appalled that you have been taken off the oestrogen when this is vital for your long term health and wellbeing.
I would go as far as saying your GP is being negligent.
Hurdity has given you excellent advice.
You need the oestrogen to protect you from heart and bone problems in the future. The pain could well be atrophy related due to a lack of oestrogen. You have been on a very low dose of oestrogen all these years and you should have been adviced to increase this dose.
Ask to be referred to a gynae or meno clinic to investigate the pains. Ask for a bone scan to check your bone density - to say you are at low risk is a nonsense unless you have had a scan. Ask for some local oestrogen alongside the systemic oestrogen to protect your bladder and vagina from further atrophy.
I had a premature meno, now 61, I am living with the consequences of too little oestrogen -  bladder, joint and digestive problems.
Good luck. DG x

[Dancinggirl]

Hi again
Just wanted to add: for you,  the benefits of staying on oestrogen far outways any tiny risks. I believe that studies have shown that oestrogen treatment, for hysterectomised women, can reduce the risk of breast cancer developing. There is also evidence that HRT reduces the risk of bowel cancer.  Being over weight, drinking too much alcohol and smoking, give much higher risks overall than any HRT. DG x

[flashbambi]

Thanks for your responses, I am going to talk to my GP and if that's no help I'll see if I can get a referral to someone who can help.

I still have some tablets and am going to start taking them again tonight as I'm fed up of this discomfort, I had enough of that before the hysterectomy (I had 13 yrs of endometriosis problems).

Thanks again, it's lovely to know there is somewhere like this for advice and reassurance.

Cheers

Joanne : )

[Annie0710]

Hi

I had a hysterectomy at 32, ovaries failed very soon after (I'm now 51) and to start with I was given 1mg elleste solo, symptoms came back so I increased to 2mg, I changed surgeries at 36 and they tried to really pressure me to come off hrt, but I was fine and healthy so I refused (they really tried to scare me)

I saw a gynae a few years back and I put the question to him” what age can I take hrt until?” And he said as long as I'm heslthy, I can take it for life x

[flashbambi]

Thanks Annie

I've got an appointment next week but am a bit worried they will try to bamboozle me with science.  I will seek a second opinion if the appointment doesn't go well.

These weird pains are slightly better today, but I started taking my HRT again 2 nights ago as I was so fed up and just wanting some relief.  After having 13 years of some of the worst pain ever, numerous operations and drug treatments, removal of ovary/tube then further big op to remove everything else, I can't cope with the idea I might have daily pain/discomfort to deal with all over again 

Thanks again everyone for your support and I'll let you know how I get on next week.

Joanne

[Dancinggirl]

At the very least, your GP should have these pains investigated. They can't bamboozle you with science when the NICE guidelines clearly state that HRT is the appropriate treatment for meno symptoms. They may try to scare you over breast cancer risks but this small risk only kicks in after 60 if on combined HRT.
That's why writing things down really helps.
As long as there aren't any health reasons for not using oestrogen eg. overweight, high alcohol intake, a smoker or close family history of breast cancer and strokes, then they are being unreasonable in not prescribing the oestrogen you need. You can use oestrogen for the rest of your life if you remain healthy. 
If they argue otherwise, I would ask them:
So the lack of oestrogen won't make urogenital problems worse?
My bone density won't deteriorate faster because of the lack of oestrogen ?
My muscles and joints won't deteriorate faster without Oestrogen? 
My sleep, energy and brain function won't suffer from the lack of oestrogen?
These are all common post meno issues which can be greatly reduced if oestrogen treatment is continued until at least 60.
Be calm but firm with them - let them know you really understand the consequences if you don't have oestrogen now. Quality of life is very important and you probably have to work till at least 66 so you need your health. DG x

[Taz2]

Hi flashbambi - just want to say that, in my opinion, your GP is talking rubbish!    There is no need for you to come off HRT at 50 because, as Hurdity and others have said, the years on HRT don't begin to count until you reach the normal age of menopause. Some GP's do suggest that you should have a break at 50 just to see if you do actually suffer any symptoms of meno and you can then go back on it if you need to. However, without some form of replacement oestrogen you are likely to suffer from gradual deterioration of bladder and vagina health even if you are not experiencing the other symptoms such as muscle aches and hot flushes.

As for the pain - although I had my hysterectomy three years ago when I had to stop HRT (due to a daft GP) I also suffered period-type pains. This was thought to be down to the fact that while off HRT the ligaments were sagging and causing pain and also a certain amount of bladder problems due to lack of oestrogen. I also got pains up my bottom also thought to be a sagging of ligaments. Once back on HRT (after intervention by a pelvic floor specialist nurse) the pains went. Don't be fobbed off. Read up as much as possible. Hurdity did print the NICE guidelines for HRT somewhere but I'm not sure where it was?

Taz x 

[flashbambi]

Hi everyone, thought I'd give you an update after my GP appointment today.

Well I went in there with printed info all ready for a fight but he was absolutely lovely!  I didn't even need to show him the stuff I'd printed out.

He said that some women come off HRT and have no problems and others have severe problems.  He said that 50yrs might be earlier for me (genetically) than would have been normal for me to go through menopause and that I could try coming off it again at 51 or 52yrs and be fine then.

He said the risks of blood clots and breast cancer are very low and that some women stay on HRT into their 60s.

So I have a new 6 month prescription and came out of the surgery feeling like I was walking on a cloud!

There's no doubt that even though I'm on a low dose, it's really helping me, I started taking it again (because I couldn't stand the pains any longer) last Thursday and by Monday the pains had stopped and I felt almost back to normal.

Thanks again everyone for all your advice and support, you gave me reassurance that I wasn't imagining my symptoms and confidence to get the help I needed.

Cheers

A much happier Joanne 

[Dancinggirl]

Delighted the appointment went well.  I'd hang onto that oestrogen for as long as you can.  DG x