Hysterectomy - HRT questions

[Londonwriter]

I discovered I had Stage 4 endometriosis and moderate adenomyosis about two years ago after a botched IVF cycle and ovarian cancer scare. I had full robotic excision surgery, including shaving endometriosis off my bowel, practically danced out the operating theatre, and was relatively healthy for the last two years.

I'm now 45, no chance of having a third child, and the symptoms are starting to come back. Constant cramping, backache, debilitating fatigue, very heavy periods, and I have a co-associated immune problem. I'm obviously now in perimenopause, as well, as my periods are skipping and becoming irregular.

The consultant (private) offered me a hysterectomy when I came in before, but I wasn't ready as I was keen to try for another child at that time.

Anyway, I'm now considering a full hysterectomy, including removal of my ovaries, to try to halt the progression of the endometriosis. But I'm really worried about dealing with brain fog and insomnia. Part of my immune problem is that I don't sleep without anti-inflammatories, at the least, and - before I got a Naproxen prescription - I spent four years waking up at midnight every night and not sleeping again. It stopped me working full-time and, at times, I hallucinated through lack of sleep.

Just wondered how bad things got without natural hormones?

I am considering asking for HRT (no reason not to) after the hysterectomy. I'm currently taking the mini-pill to stop my periods - I tried to get a Mirena on the NHS, but it was a four-month waiting list.

Hey there, best of luck with your health journey,
My two cents is before you give up on kid no 3, go keto/carnivore. Even if no 3, does not happen, a ketogenic diet is going to help.

To understand the hormones:

Pcos;
s

And general health:
https://www.youtube.com/@PHCukorg

I’m already on a borderline Keto/carnivore diet because I had severe gestational diabetes with my younger boy, so I cut out sugar completely and most carbs.

Unfortunately, cycling, zumba, jogging, weights/body pump, a low-carb diet, iron tablets, DHA/EHA supplements, getting plenty of sleep, being a healthy weight… blah blah, don’t really help if you’re running low-grade fevers constantly and your organs are tied together. I know, because I do all of these things, and I still have the health problems.

I’m sure my rubbish health is less rubbish than it would be otherwise.

It’s like telling someone with metastatic cancer to try a different diet. There are things that lifestyle changes can help with, and then there is serious disease…

Hi OP, I paid a private GP to fit my mirena as NHS had a waiting list.

My NHS doctor gave me a prescription for the device, I collected it from Boots pharmacy and took it to the private GP who fitted it for £200.

If I hadn't taken my own device it would have been £150 extra for the actual coil.

I called the GP in advance to see if they would do this for me.

FWIW, the combo of mirena/oestrogen patches/testosterone plus magnesium means that I'm sleeping like a 20yr old again. Good luck.

ok. Ignoring the people who tell you that it’s just a matter of diet.

i had a hysterectomy about 10 years ago. I kept my ovaries but they packed up fairly quickly. If you lose your ovaries then you go immediately into full menopause, you’ve not got that fluctuating hormones thing which most of us go through over months or years. Any surgeon would recommend HRT in that situation unless there’s a very strong reason not to. It’s not just brain fog and insomnia, there are lots of other issues which might occur like anxiety, aches and pains, vaginal atrophy, hot flushes…

I would be very surprised if your doctor doesn’t discuss all this with you.

Oh and after a hysterectomy you do not need progesterone- just oestrogen

Having had wide excision surgery at 45 for stage 4 and agonising sticky organs and now being 49 I really wish I'd just gone the whole hog and taken it all out at 45.

Mine didn't come back "yet" but the HRT journey is hard with historic endometriosis, I'm super sensitive to the oestrogen side, it causes histamine reactions.

I do wish I'd had a full hysterectomy and then I would only be trying to balance my oestrogen, no worries about uterine cancers, ovarian cancers etc.

Yes, so sorry to hear you’ve been/are in the same situation - I wouldn’t wish it on my worst enemy. I’ve already had my sticky organs (ovaries, bowel, uterus) detached once, two years ago. Last time we checked, my ovaries were already sticking back together.

If I have a partial hysterectomy, I assume my free-floating ovaries will promptly stick to my bowel again. I just don’t know if I should risk it because the alternative would be ‘worse’ (e.g. insomnia, brain fog, mood swings, no libido).

I tried taking progynova (oestrogen) for a medicated frozen embryo transfer, and I was horribly allergic to it - vomiting, dizziness, etc. I didn’t know I had endo at the time, but I now wonder if that was something to do with it. I have a horrible follicular phase of my cycle - nasty constant immune reactions and narcoleptic exhaustion. My luteal phase, by contrast, is a breeze.

OP, taking progesterone now might help if you can get a doctor to prescribe progesterone only hrt. If you do have a hysterectomy make sure you are prescribed progesterone, it is recommended for women who have endo even if they don't have a womb.

I got the mini-pill from my pharmacist without prescription as a Mirena (from the local STD clinic) had a three-month waiting list.

I’ve been taking it for a week, and it’s relieved the narcoleptic exhaustion (a bit), but my uterus is large and heavy because I have adeno, and my organs are likely stuck together. I thought the progesterone might be a silver bullet, but it’s not because… well, my organs are (painfully) stuck together. Not much that progesterone can do about that.

I'm on the waiting list for total hysterectomy for the same things (also bowel surgery) in the meantime the dr has given me jabs to put me into menopause as well as hrt alongside. I know I'm done having children though, if you know you're done is that an option? It is a Mega relief for my bellyache/womb drag etc

Reading you reactions and Endo I'd go full get those ovaries out, they are going to conk out anyway, so best to get them out and manage the dive into menopause.

It's almost easier than the gradual decline as you know it's going to happen, it's not just niggles here and there.

I would say as a fellow allergic to everything person is to read up on histimine and histimine reactions to HRT.

I've manage to get onto HRT that suits me by using patches, cutting to a quarter then a half then trying a full patch over 6 weeks, gradually increasing the dose. When did hell it was a nightmare, the huge daily spikes had me going crazy and physical symptoms.

So patches are your friend, as you have total control.

I'm just on the right dose 2 patches after 6 months of gradual build up and almost symptom free.

No periods as I take non cycle progesterone and the balance of the oestrogen.

In a few months I'll add in the testosterone to give me some energy!

Good luck x