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[Richsty]

I am nearly 46 years old and started early menopause at 39. The GP put me straight on HRT due to my hormones levels being so low for my age.

It has just been a long nightmare since! I have tried every combination available but as soon as progesterone is introduced I feel awful!

I feel amazing on just estrogen but do not seem to be able to tolerate any form of progesterone. I have tried Ustrogen once a night, every other night and vaginally, I tried an IUD which was the worst and made me feel suicidal, I have tried Evorel sequi and Evorel conti which made me bleed nearly constantly for about 6 months! As soon as progesterone is introduced I have severe mood swings, depression, brain fog, lack of energy and motivation, low libido. This has gone years and has really taken it's toll on me, my marriage and our family life. I am so lucky to have an amazing, supportive husband but it is very hard for him and I can be so horrible and moody, I feel sorry for him and my children.

I was finally referred to Gynaecology last year and saw a consultant in Jan. A hysterectomy was discussed as I feel so good on estrogen alone but he wanted to try one more thing and put me back on Ustogen 100mg  every night every two weeks with my usual Evorel patches and started me on an antidepressant, Venlafaxine. Unfortunately the Venlafaxine made me feel terrible with severe nausea and chronic fatigue and  had to came off them. I  then had 6 weeks on estrogen alone while awaiting appointment to see the consultant again, and honestly it was amazing! My brain fog was gone, my energy levels back, my libido back, my mood swings gone and I felt happy and content and like my old self again.
After seeing the consultant again feeling good about having surgery and getting my life back, he wanted to try one more time and has put me on Norethisterone 5mg nightly. Well I have been on it 2 weeks and again feel dreadful. My mood swings are awful again and I'm snapping at my husband and children over the tiniest of the things and feeling so peed off! My libido has gone, I feel down, absolutely exhausted to the point I'm struggling to stay awake at work, I'm bloated but my appetite has increased.
I just don't know what to do! Should I continue on it and hope that the side effects will settle as it's not been long? Or do I just come off and see my consultant in a couple of months as i'm worried that if I saw him now he would say that I haven't given it a chance. I do want to give it a chance but feeling so rubbish again after feeling great is so difficult. I feel like most of my 40's have been ruined by all this and I just don't want to carry on for more years suffering.

[sheila99]

Did you feel OK on the evorel conti patches and it was only the bleeding that was a problem? 5mg norethisterone is more than you need, you can cut them in half and it's still safe. Are you n a sequi regime or conti?

[bombsh3ll]

I would just stand firm, be assertive and advocate for hysterectomy.

Just keep telling them clearly that progesterone/progestins are not tolerated, and antidepressants are not indicated.

At the moment you have age on your side but time is of the essence - guidelines strongly and unanimously recommend estrogen replacement for health reasons until at least the usual age of menopause, so you have more leverage than you think.

However as you get closer to this age, certainly the NHS will become less and less willing to offer hysterectomy as it will be "well you're 50 now, or almost 50, so now estrogen replacement is a luxury or a lifestyle choice not a clinical necessity".

If you are not getting anywhere on the NHS it may be worth looking into self funding it.

You may find that the consultant you see privately can pull some strings and put you forward on the NHS - this happened to me after trying for years to get risk reducing mastectomies on the NHS, I decided to go private, and the Harley St consultant bless his heart wrote to the NHS saying with my family history there was no way I should have to self fund the procedure, which happened at my local hospital very quickly thereafter.

[Uma17]

Hi Richsty, contact your consultant by email for advice asap. Keep a diary of your symptoms. And ask to be put on the hysterectomy waiting list to avoid any further delays as your symptoms are affecting your life so much.

[GalwayGirl]

Hi Richsty
I hear your paln and suffer from many problems with progesterone- I currently get by with using a small amount of cyclogest every month to bring on a bleed but it’s way under the recommended dose. I have had regular scans and all is ok so far. My GP this week suggested the Jaydess coil as a last option although it is off liscense and has the smallest amount of progesterone you could get. I am probably going to try this but very wary as also have major depression (also just been started on venflaxaine aswell as mirtazapine).
So you could try cycolgest and then ask about jaydesss? Though cyclogest may just give you same experience as utrogestran. Hysterectomy is very drastic and I would think very carefully before you opt for that and research it well. Many women do manage and survive well without hrt so you could also think about stopping it altogether but that’s a very individual choice Ofc.

[bombsh3ll]

There's also tibolone if that hasn't already been considered.

However if I didn't have a pelvis full of adhesions and dysautonomia which poses an unacceptable anesthetic risk, I would have a hysterectomy myself, as pretty much every measurable outcome is better in those lucky individuals who can take estrogen and testosterone only, no progestogen.

[Richsty]

I would just stand firm, be assertive and advocate for hysterectomy.

Just keep telling them clearly that progesterone/progestins are not tolerated, and antidepressants are not indicated.

At the moment you have age on your side but time is of the essence - guidelines strongly and unanimously recommend estrogen replacement for health reasons until at least the usual age of menopause, so you have more leverage than you think.

However as you get closer to this age, certainly the NHS will become less and less willing to offer hysterectomy as it will be "well you're 50 now, or almost 50, so now estrogen replacement is a luxury or a lifestyle choice not a clinical necessity".

If you are not getting anywhere on the NHS it may be worth looking into self funding it.

You may find that the consultant you see privately can pull some strings and put you forward on the NHS - this happened to me after trying for years to get risk reducing mastectomies on the NHS, I decided to go private, and the Harley St consultant bless his heart wrote to the NHS saying with my family history there was no way I should have to self fund the procedure, which happened at my local hospital very quickly thereafter.

I was thinking of getting a second opinion privately, thank you that's good to know they helped you. I really think surgery is my best option to feel good again and have some sort of quality of life!

[flo69]

Have things moved on since May, Richsty?

I also suffer from progesterone intolerance and heavy bleeding, I say both because both are controlled by progestins.

Don't take any more progestins please, for your family's sake as well as your own. I know what sort of low mood you are talking about and clearly if the consultant is willing to tell you to do it again when all other attempts have been utterly miserable for you, that doctor doesn't know progesterone intolerance at all.

Progesterone intolerance kills women, it is not a fairy story. Women are seven times more likely to kill themselves at menopause, the hormone most hated is progesterone, it's not discussed but if there was a statistic like that for men, something would be done!

I do not suffer from depression. If I take progesterone I will feel suicidal within days, I will struggle to not harm myself. Remove the progesterone tablets and I'm better in a few days.

That is seriously risking harm to me every time my GP tells me it's all in my head and insists she knows best and it isn't a real thing, not in menopause anyway, not with HRT.

Please don't be gaslit by the GPs. I was, it was awful and caused a lot of damage to my sense of well being. I got the practice manager involved in the end, it's really bad what a doctor will do just to make you go away.

I take tibolone now, it makes me feel normal, I'm 25 months on the waiting list for Gynae, perhaps they'll suggest something whenever that happens.