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[thetoot]

Hi – I am new here, and hope someone can help
I have endometriosis, severe Chronic Fatigue Syndrome, and I'm currently going through the menopause. I am experiencing unpleasant menopausal symptoms, which are worsening the CFS, so I'm considering trying HRT.
I am looking for a (probably private) Menopause specialist/consultant who specialises in endometriosis.
I also have hypermobility, which can be affected by taking hormones, so would need someone who also has a good understanding of this too.
Furthermore, I have allergies, gut issues, and other complex health issues related to the CFS, so would need them to have a good understanding of my overall condition, and how it may be affected by taking HRT.
It is vital I find someone who is experienced and knowledgeable about all of the above, so they can help me weigh up all these potentially conflicting needs, and find the best solution for taking HRT, and managing the menopause.
I have read different advice about whether a Menopause Specialist or Consultant would be better for me. I think the title is less important than finding someone with the relevant experience knowledge and expertise. I need to find the right person to my particular needs.
I have no idea how to find this very specialised help. I don't know if it is permitted to ask for recommendations on this forum – if so, I would appreciate it very much. Any other information relating to my situation would be gratefully received. Thanks so much

[Flossieteacake]

Hello and welcome to the forum. Just to say, maybe it would help for the specialists to work together to help you with this? I cannot see one specialist having the knowledge that will help you to make a decision but hopefully whomever you work with will be willing to work with other specialists.

[CLKD]

Do U already see an endocrinologist?  Rising hormone levels can aggravate some conditions = an increase in tiredness.

MayB have a list of queries; a dedicated menopause clinic may be the 1st way to go, rather than a gynaecologist who often don't have peri-menopause knowledge. 

Perhaps have a lookC at Dr Louise Newson's web-site?  She may be able to direct you to someone with knowledge of your various health issues, or a group of specialists happy to work together for your best interests.

Let us know how you get on.  Dr Currie who runs this Forum might help too: she charges a fee for a query [details at the top of the forum pages]

[Renee]

Hello
I suffer with CFS and Fibromyalgia along with Hashimoto's and Sicca Syndrome. I'm 57 and was on Tibolone for a few years then taken off 5 months ago. I have felt a decline in joint pain, fatigue, mood, libido etc.

I have been prescribed Evorel patches with Ultrogestan capsules.

I told my GP having chronic illness is enough to deal with daily but menopause on top is too much. I am suicidal and very depressed which isn't like me at all.

I hope you get the help you need.
I totally understand.
Irene x

[thetoot]

Thank you to all of you who have taken the time and trouble to reply. I am housebound, and feel very isolated, and to know that strangers have been kind enough to reply to me means a lot.
Flossie – thanks for your welcome. Yes, different specialists working together may well be the best way to go.
CLKD – no I don't see an endocrinologist. A menopause clinic – especially Dr Louise Newson's is a good idea, thanks for the suggestion.
Irene – I'm so sorry you're going through such a difficult time. I really appreciate your kind words. Hang in there, and I really hope things improve for you soon X

[Renee]

Being chronically unwell has been the hardest journey of my life to be honest. I'm sure you feel the same.
I too am housebound alot and need Spring/Summer to arrive so we can start to feel better within ourselves.....at least sit at a sunny window or in our garden.

Take good care of you.
Irene x

[CLKD]

Renee - did U explain to your GP that you are depressed to the point of suicide?  Samaritans are always at the end of a phone and MIND charity often have walk in opportunities. When I needed the latter they kept in contact via e-mail so that might be an option for you.

Let us know how you get on both!

[Claire MM]

Dear The toot! I do not have endometriosis but do have ME/CFS, have only one remaining ovary and hypermobility. I had been having perimenopause symptoms for a long time but got no help via GP. A friend had consulted Newsons so I went to them via zoom. One thing that helped me make up my mind was that if I stopped HRT I would go back to where I would naturally be in perimenopause so in a way I thought I was so ill I didn't have a lot to lose. After 3 months on estrogel and cyclical utrogestan I was at 50pmol of estradiol on my blood test which is very low. After a time the utrogestan was too much for me and I switched to using it as a pessary.

I still had joint issues, low estrogen even on high dose and got some urinary/VA issues and wish I had used estrogen cream & pessaries topically as using progesterone as a pessary. I switched to cyclogest which is a progesterone pessary and this seemed to help although took time to settle extra bleeding, still wish I had used the topical cream but didn't and got urinary/VA symptoms again.

Unfortunately lately I got pressured into a Mirena coil which for me I cannot recommend and I will go back onto cyclogest. I quite like it as I can tailor the dose of progesterone that way as the pessary can be cut up. What I would say is that I have not heard of a menopause clinic either private or NHS that really gets it with ME/CFS and takes this and/or hypermobility fully into account. It helps to gather information yourself as much as you can. For me I believe that a lot of my CFS/ME has a hormonal origin and I would have benefitted from having hormones considered earlier in my life. I would say don't be afraid to say 'no' to what doesn't suit your body and if at all possible I would have your levels tested because we are all so different in our abilities to absorb or tolerate certain things.

What I would also say is that I bet that Newsons would say to you start on two pumps of estrogel every day and 200 of utrogestan orally for 12-14 days per month for the first three months and then get your levels checked - this is a regime you could request from your gp, and you may want to consider using the utrogestan as a pessary in which case I belive you only take 100 (! capsule) at night for 12-14 days of your cycle vaginally, also ask for the ovestin estrogen cream. If your estrogen is still low at three months bloods they may encourage you to increase it to 3-4 pumps per day. If your GP will also check it they tend to ask for bloods for testosterone and sex hormone binding globulin aswell. My testosterone was at zero which does add to fatigue and other symptoms. I wish they considered progesterone levels but they don't usually. This is just my tale so far with it, there are other clinics out there and it may be worth having a good shop around or trialling an initial HRT regime with Gp surgery to see how you feel. I'm not sure with the endometriosis however. This is just my experience as I could really resonate with your position, sorry if it's TMI Xx

[Claire MM]

Just to add that regime - the cyclical progesterone for half the month is suitable if you have had a period in the last 12 months, otherwise you take it continuously at half that dose xx

[CLKD]

   Claire

Let us know how you all get on.

[thetoot]

Hi Claire – thank you so much for your detailed reply. No it wasn't TMI! I found all your information really useful. I have been reading about different methods for taking HRT, so was interested to learn what you had to say about creams and pessaries – I've been thinking this may be a better way for me to start, as I have allergies/ gut issues, and often react to things I take orally. Also interested to learn about your experience with the Mirena coil. Although I'm sure it works well for plenty of women, it is not something I am keen to try. I agree, we should not be afraid to say no things that do not feel right for our bodies.
Yes, like you  I have not come across any menopause clinics that take CFS/hypermobility into account. There are so many clinics on the British Menopause Society website, that it is impossible to contact them all to see whether any of their specialists deal with this.
Dr Newson's is a good idea, as one of the other contributors also suggested. They have many menopause specialists there, so it is possible that one of them will also have some expertise in CFS/hypermobility. The only other potential clinic that came up from my googling is menopausecare.co uk. Some of their doctors specialise in endometriosis, so I could ask if any of them also have experience with CFS et cetera. If anyone reading this has any experience of this clinic, I would be very grateful to hear about it. Thanks so much once again

Irene – hope it was sunny where you are today, it was sunny with me, and I really enjoyed being in the garden and watching the birds. Take good care of yourself X


CLKD – thanks will let you know I get on!

[Renee]

CLKD,

Thank you. Yes I was very honest and told my GP how I felt. Couldn't believe I was actually saying it to be honest.
This week my depression seems a little better.
Not sure if it's because I spoke to my GP or if the HRT is helping already?

Much appreciated.
Irene x