Would appreciate hearing from people going through similar?

[amberbrown]

Hi I had a total hysterectomy a year ago - including ovaries, the whole lot. For a while I felt fine, then gradually struggled to breath, raspy throat, lack of energy, breathless, it got worse and was admitted to hospital. When I came home I got estrogen patches, am now on 25 mg and felt much better all round. But as time has gone on now have raspy throat, lack of energy, breathless, bad cough. Went on lansoprazole which seems to do little or sometimes make it worse. I can only talk t a NURSE at my doctors, she does not seem to understand much about this at all - I feel that despite knowing very little I know more than her. When I told her I have stomach aches that come and go she said it might be because I had endeometris - yet my womb has been removed, so if most or all of it has gone I dont see how I would suddenly get stomach aches from that when I never had them before. Anyway those stomach aches would not come and go.

If I increase my patches to 37mg I end up with very bad ear and nose which nothing will shift.

I've asked for progesterone and been refused it as according to them it is not negotiable when I no longer have a womb and am 65.

One thing which has helped me a lot with anxiety, feeling low and insomnia is eating a kiwi fruit in the evening. Serotonin.

[Mcyizml2]

if you’re getting stomach aches it’s worth asking your gp to have a proper look at you, there may be something else going on that’s nothing to do with this…

[Avourneen]

Lack of energy, sore throat and breathlessness seem more like long covid or some sort of asthma issue than endo. It's hard to see how oestrogen would make any difference to that. Normally progesterone is given rather than estrogen if you have had endo as estrogen carries some risks of it coming back.

It all sounds a bit mysterious stomach aches could be from ovaraian remnant if the docs missed any bits of ovary but it could be lot sod other things. I had bad stomach aches (at the top of my stomach not like typical endo pain ) I had an endoscopy and found I had a hernia so my stomach/ food was slipping up into my chest. I changed the time I eat in the evening and it's fine now.

I think you should go back to your GP and ask him/her to do a proper investigation blood tests, tests on your breathing and for asthma and an endoscopy to check what is going on with your stomach.

It could all be connected to endo but it might not be. The irony is it takes so long to get diagnosed with endo and then the danger is that every other possible health problem you have is assumed to be endo without any checks. Go back to your GP and say you want this investigated properly and insist. You have every right to be checked out properly and this is what the GPs job is not fobbing you of with the nurse. Good luck.

[AlexaMac]

Hi amber, l have been on a journey a little like your own, l am just turned 77 and had a partial hysterectomy and ovarian cyst removal December 19th last year and 6 weeks later had the hysterectomy completed due to tumour embedded in endo in my upper womb area, which they found during surgery.

This as l say was my second op and should in the next few weeks be going into cancer hospital for brachytherapy to try to alleviate the chance of cancer returning. This will be a 20 hour treatment, one shot of radio each hour over that time.

I can only say that my second consultant was much better than my first, if l had had him from the beginning my journey would have been completed a year ago.

On both occasions l was not I’ll or in pain afterwards but it took me the full 6 weeks each time to be able to feel as though l had my energy back.

I hope your journey to health goes well, do ask me questions if this will help.

Alexa 🌸🌸🌸