Surgical menopause

[Pegs11]

Hi, this is following on from a thread I started last week... I went through surgical menopause seven years ago (aged 32), tried basic HRT but didn’t get on with it (progesterone made me sad and angry).

Had 3 rounds of IVF following that, the last one was 2 years ago (ended in miscarriage).

For the last two years since then I’ve been on tibolone, it was prescribed for mood and libido. But it hasn’t helped, in fact my mood and libido have continued to decline and I have gradually developed a host of other horrible symptoms such as extreme fatigue, muscle weakness, post-exertional malaise and palpitations... to the point I was actually diagnosed recently with ME/CFS...

I am only 40, yet feel 70. I am exhausted. My muscles are so weak I struggle with ring pulls and lifting the kettle. I get head/eye pain, my glands feel sore, I have terrible brain fog and memory loss.

As I never got the right advice, I had no clue my symptoms could actually be related to surgical menopause... especially so many years after my surgery.

Having got nowhere with the NHS, last week I spoke to a private menopause clinic (on the advice of another forum member here) and they have prescribed a new form of HRT (estrogel, utrogestan and testogel) which I have just started taking.

I’m confused though, as I thought that with surgical menopause, the symptoms (fatigue, anxiety etc) kicked in pretty much straight away, or at least within a few weeks?? But I was ok at first... had a bit less energy maybe... but it’s only in the past couple of years, since I came off the last set of IVF hormones and started on tibolone, that I’ve really been suffering.

The symptoms, especially the fatigue, have fluctuated over that time... it started off being less frequent, I’d get fatigued every few weeks and it would last a few days. But inbetween those times I would feel pretty good.

At first I actually thought I was just getting repeated viruses. Then my symptoms started being more frequent and lasting longer. I started having more bad days than good. Now it’s got to the point I rarely have good days and feel exhausted, weak and stiff, and anxious/emotional almost all the time.

I just wondered if this gradual decline is normal...? Has anyone else suffered a belated, gradual decline since surgical menopause? As I am surprised it took 7 years for me to get to this low point. And as I said, I felt pretty much fine at first, in fact I spent 3 years or so after my surgery on no HRT at all, and only suffered minimal symptoms.

The reason I’m so concerned about all this is, I guess, because I am so desperate to start feeling better, and I hope my symptoms really are all down to surgical menopause, and that there isn’t something else causing this! I don’t want to have ME/CFS... I want the reason to be hormonal! Because then it feels simpler, and more hopeful, as there are things I can try. Meno clinic says the new HRT will fix me. I am just so desperate for this to be the case..... it’s been a week and I don’t feel any difference except that I feel quite a bit sadder at the moment... I’m hoping that’s just my body adjusting to the HRT.

Anyway, if anyone has any advice or can share any similar experiences - especially re: the gradual decline following surgical meno - I would be very grateful for the support.

Thank you.

My CFS/ME started before my surgical menopause. I’m 42 btw.

I think I actually feel a little better since my hysterectomy, as I’m no longer anaemic, and the HRT has has certainly help wrt moods, weight, hair & overall feelings of wellbeing. But yes, I do feel weak, dizzy and about 90. I have occasional good days but I have never returned to how I was when I was running, doing weights & yoga 6 times a week. I now rarely get off the sofa. It’s tough, especially when people around you don’t understand how exhausted you are feeling but, 5 years in, i do have a sort of acceptance and have learned to pace myself. There are times I’m so weak it’s a struggle to lift the fork to my mouth to eat. Other times I’m able to do a bit of gardening. You have to learn to just work within your limits, if you use too much energy - use all your spoons-it will impact you the next day.
Sorry you are struggling, I would love to say it will get better -some people actually do!- but there is no guarantee.
www.actionforme.org.uk/news/tools-to-help-you-talk-about-your-me-cfs/

www.actionforme.org.uk/living-with-me/treatment-and-management/pacing-and-energy-management/

metro.co.uk/2017/05/12/10-things-you-only-know-if-you-have-chronic-fatigue-syndrome-6607267/

www.dchs.nhs.uk/assets/public/dchs/services_we_provide/service-directory/our-services/health-psychology/Fibromyalgia/Self-help_guide_to_recovery_-_chronic_fatigue_and_fibromyalgia.pdf

www.actionforme.org.uk/uploads/pdfs/employers-guide-to-me-booklet-2016.pdf

@Pegs11 I'm so sorry you are going through this.

All I can say is that losing your ovaries so young, will give you many symptoms and those you describe are often experienced with menopause.

I'm assuming you have been in touch with the clinic in Stratford? (I think I suggested in your previous posts that you tried for an appt with the Chelsea and Westminster meno clinic, or other London meno experts?)

Obviously at the moment, any NHS clinics are not available as such and working by phone mainly, though private consultants have phone and Skype consultations.

You need to give your new form of hrt time.

We discussed the use of Tibolone before and I think I suggested it wasn't right for someone of your age who had no ovaries.

Don't get hung up on whether it's CF or whatever at the moment.
I think it's easy for you to underestimate the effects of a total loss of estrogen on your whole body; estrogen supports every single organ we have as well as building collagen between joints etc.

With your current HRT, do you still have a uterus- I assume so otherwise you would not be given Utrogestan.

Are you taking that as a cycle or daily? Not everyone gets on with it daily. (I don't.) You can use if as a cycle for 12 days a month.
This often helps if you find it affects your mood and in some cases you can lengthen the estrogen-only weeks from 4 to 5 or 6 with medical consent.

@Unravellingslowly thank you for your reply and for sharing your experience. I’m sorry you have to live with M.E. But glad you have found ways to cope.

I do find it really hard to accept this and to pace myself, I hate being inactive ... partly because I miss being able to do the things I love like going for long walks and getting really stuck into some gardening.

And also because I tend to comfort eat and when I’m low, those calories are going nowhere except on my gut. I’ve tried really hard with my diet but keep slipping back into bad patterns when I get low/stressed, as then it becomes almost impossible to exercise any will power on top of everything else. It just feels like another “thing” to struggle with, and I can’t do it. I went to a dietician recently to discuss the surgery I’d had, as it left me not just without my ovaries but also half my bowel, my spleen and gall bladder (and more) and I thought I might need some advice on what to eat when I only have half my organs. She was honestly useless. Gave me five minutes of her time. Just asked me how my bowel movements were and told me to take a multivitamin.

If I sound bitter it’s because I am... I have been let down at every turn since my cancer surgery... and even before that, as no one believed my symptoms and kept fobbing me off for a year before doing a CT and discovering I had a 9cm tumour in my bowel ...

...And then I spend two years on HRT that isn’t right for me, with no review, even when I have repeatedly told my GP about my fatigue and brain fog.

Anyway, apologies for the rant. I’m really angry!! I don’t think that helps with the fatigue either, all that negative energy.

Thank you for being supportive xx

@JinglingHellsBells thank you again for reading my post, and thank you for the advice you gave me last time, I don’t know how I would have got on this new HRT path I’d it weren’t for you. I actually spoke to a meno clinic (private) in my local area. She seemed to echo what Nick Panay said in that podcast you mentioned, so I felt confident in her advice.

I haven’t felt any difference since starting to HRT... except perhaps a slight stirring in my loins! Which gives me hope that my libido can be restored.

She prescribed estrogel, utestrogen and estogel and said I can take all three on an ongoing basis. She said I don’t need to have periods despite still having a uterus.

You’re right, I shouldn’t get hung up on the CFS diagnosis right now, not until I’ve given these hormones a chance.

The thing about an ME/CFS diagnosis is that it basically is just a collection of symptoms, with no known cause or treatment. (Although they have found that many people with the illness have weird stuff going on with their brain, heart, proteins, cytokines etc). So it can be a frustrating diagnosis to get as it can feel, for many, like there’s nowhere to go from there. This is why I’m desperate for it to have an identifiable cause and to be treatable.

Come on hormones! Fix me!

All I'd say @Pegs11, is that the treatment sounds promising BUT some women find daily Utrogestan a bit of a mood flatterner. Others find it fine, but bear it in mind. I couldn't get on with it at all, daily, and still use it on a cycle, even in my 60s. See how you go but don't forget that you can change to a cyclical regime, using it every month rather than daily.

@jinglinghellsbells
Cyclical? So you mean like a normal cycle that results in a monthly period?

I’ve heard you can do that every three months instead, so only 2 weeks of progesterone every three months... That would be my first choice, if the daily progesterone doesn’t work out.

The clinic said using it vaginally tends to affect mood less than other ways. We will see!

@Pegs11 Every 3 months is at the far end of the 'allowable' scale and can only be done with supervision from a consultant/ GP. (You will have a 'period' at the end of the cycle.)

This is because - more in older women a long way post meno- a 12 week cycle can sometimes result in break-through bleeding as the lining starts coming away. If this happens, they usually like to do a scan etc to see if all is okay and nothing more serious.

You won't get an NHS GP agreeing to a 3 month cycle as it's not licensed.

I have a slightly longer cycle- not 12 weeks- but more like 7 or 8- private dr.

Using it vaginally does reduce side effects, yes, I use it that way.
However, if you are sexually active it can be hard to sort this as the capsule is best inserted at bedtime.

Hi @jinglinghellsbells

I guess the reason I am not keen on having a monthly cycle is I remember how bad this was for me. It always meant I only had one or two good weeks out of every month! Because the month consists of 2 weeks of (oestrogen and) progesterone - so that’s ( up to) two weeks of bad moods, anxiety and depression - then following that, a week of being on my period. Leaving just one week - or two if I’m lucky - for me to be normal. I suppose it would still beat how things are for me currently... but it still seems to fall some way short of the life I’d hope for.

This pattern was what it was always like before I went through surgical menopause, and when I first tried HRT after the surgery.

Admittedly I was on patches at that stage, rather than a progesterone pessary.

I have heard some people are “progesterone intolerant” ... I wonder if that could be the case for me, what do you think?

I think I'd see how you are with taking it daily and if it makes you feel down, think about cyclical. As you have had a private prescription, your dr ought to be fine about adjusting the regime you are on.

Progesterone intolerance is quite rare although a lot of women feel a bit down in the 2nd half of a month anyway- the PMS factor!

Good luck with it- b e optimistic and hopefully it will all work!

Thank you, I will stick it out for a while and see if things improve :)

@JinglingHellsBells just an update: I’ve found myself feeling really sad and tearful the last couple of days (more than normal, lol). I thought it might be the progesterone. Spoke to clinic again, they said try taking it every other day (instead of every day). Really hope that helps. The last thing I need right now is to feel more depressed and anxious than I already did. X

Hmm.... it would be unusual to feel so bad so soon with only 2 x 100mgs progesterone. However, you know yourself best.

I use 200mgs a day for a cycle and by day 6 or 7 I'm feeling a bit lethargic but keep going to the 10th/11th day.

Little surprised they suggested 100mgs alternate days as this might not be enough to control the build up of the lining and you may get some spotting. Which clinic are you using?

Hi @JinglingHellsBells I’ve been taking the utrogestan for 9 days now, it’s just the past couple of days have been especially bad mood-wise.

What is the problem with getting breakthrough bleeding (other than it being a bit of a pain ) ?

Thank you

There isn't really a problem, well- maybe there could be.
You would only be taking half the licensed dose, as a continuous regime, so that could be the issue long term if the lining builds up and is never fully shed. I'd expect you to be monitored with a scan if it happened longer term.
It's 100 mgs a day or 200mgs for 10-12 days per month ( or longer cycles where approved and monitored.)

I spotted using 100mgs daily so no doubt alternate days would have been even more of an issue.