Only me again 🙄. Has anyone opted for a hysterectomy during their battle with Lupus! I feel my hormones are feeding every flare

[Lisalou19]

I can literally tell what day I’m on during my cycle, due to increased skin rashes, painful hands , feet and back!

I’ve always noticed my hormones play a part in this. Although I was symptom free during pregnancy! I tried putting myself on the contraceptive pill to send my body into thinking it was pregnant, unfortunately it had the adverse affect which made me very ill and a rash like I’ve never had before.

I’m thinking of suggesting I have my “cooking station” removed, but not sure if this is something an experienced doctor will eventually suggest 😏 or I should suggest myself .

[eekt]

EMPATHY!!! I had extreme dysmenorrhoea and menorrhagia coinciding with flares. HAPPILY a nurse suggested a Merina (Estrogen-free) implant which ended the pain and bleeding completely within months! Very, very pleased! GP can advise! xxx 🤩

[Lisalou19 in reply to eekt]

I had to google them words 😂 I’ve not had cramping for years but over recent months they are getting worse. But it’s all the over symptoms, pins and needles in hands, painful feet, rashes on face arms and legs. I’m to scared now to try anything that contains a hormone as I was very poorly last time I tried x

[eekt in reply to Lisalou19]

My GP doesn't know them either!! 🤭 The implant (progesterone) seems to have leveled out flares for me. I don't know the science but since it's mostly women that get lupus, estrogen might be a culprit! xxx

[Lisalou19 in reply to eekt]

How easy is it to get an implant back out ? Taking the pill made me so ill but I immediately stopped it!

I was offered estrogen patches by a gynaecologist. This was offered to stop pms, I asked about the treatment of rashes etc, I was told I would have to accept them 🙄 to me there was zero point in taking something that was not going to get me any relief from the worst part of what is going on .

I was prescribed a hormone blocker, danazol which gave me some respite. Only I couldn’t be on them long term as she could not advise best way to take them along with a correct dosage. I had to take a break as I had not bled for some time, tried to go back on them and they never worked quite the same again. Although I do believe this is because the disease has progressed rather than the tablets not working !

X

[eekt in reply to Lisalou19]

Just as quick as you can get a GP appointment BUT I found an old thread with strong opinions on the Mirena: healthunlocked.com/lupusuk/....

Talk through options with your team. It must be absolute misery for you, knowing what's coming every month xxx

[Lisalou19 in reply to eekt]

I currently have no respite. My monthly’s are every 21 days, so as quick as my hormones die Down, they start to spike again! It’s a living nightmare. But I make the most of my good days 😊 and hide away on the bad ones xx

[tweetyburd]

I tried all the progesterone only methods, they just made me bleed!! Couldn’t have the combined pill due my risk of clotting 🙈 so..... I had an uterine ablation which did help for a while but started to fail last year 👎 only option left was a hysterectomy, I’m 9 weeks post op tomorrow 👍 don’t get me wrong, it’s been no walk in the park but I know it’s going improve my life long term, as the Gynae doc said we can’t cure the lupus but we can do something about the bleeding & period symptoms. It’s definitely an option to talk about with your doctors, my gp referred me to Gynae but my rheumy was involved as well.

[Lisalou19 in reply to tweetyburd]

Would you mind if I asked how old you are? My hormones are definitely feeding what ever is going on!!!! I want to push to have it all removed, but I’m guessing this is not a guaranteed resolution. I would be very interested to hear from you regarding the key benefits , if any as you progress with your recovery . Xx

[tweetyburd in reply to Lisalou19]

I’m 37, so quite young really for a hysterectomy!! They’ve left my ovaries because of my age. I found that the blood loss each month just made my lupus fatigue even worse & made me feel so poorly. Lupus is hard enough to deal with without anything else making it worse! My ferritin levels were falling as well & couldn’t cope with iron tablets due to all my other meds so that aided in the Gynae doc giving the go ahead for the hysterectomy.

[Lisalou19 in reply to tweetyburd]

I’m 37 too! I keep getting told I’m to young. But I think I’m so in tune with my body, it would certainly offer some respite.

I think I would need my overies gone. To be honest I would let them take anything if I had the chance of a normal life.

X

[whisperit]

Hello Lisalou19

This is quite a good read into hormones and lupus. It doesn't have any answers, but maybe useful background? lupusinternational.com/Livi...

[Lisalou19 in reply to whisperit]

Thank you. I am going to read through this, this evening. I always thought I had an allergy to my hormones, that’s the only thing I can pin point as a major contribution to my health problems. Alcohol is another , so I pretty much stay clear xx

[Lisalou19 in reply to whisperit]

I feel like I have just read my life in a more professional manner. I have been saying for years my hormones are feeding this illness. The doctors look at me like I’m some sort of nut case! This has given me some clarity that my hormones are aggravating the illness. When I was pregnant in 2013, after a bad case of labringritus (can’t spell it, inner ear infection) I carried with no fatigue, no rashes , it all went until my son was 9 months old. It was heaven. Then it returned with revenge 😔

[Treetop33]

I'm definitely affected by hormones, but at the other end (perimenopause). Just had 10 days of bleeding heavily before my doc prescribed progesterone which stopped it immediately. I felt rotten during the entire time but am remarkably perky on the progesterone. Hmm....

Might be worth getting checked out for hormonal imbalances. Diet affects hormones a lot btw too. Then you might be able to work out what to do.

[Lisalou19 in reply to Treetop33]

I had my hormone levels checked . That come back fine . Any form of hormone I have tried makes me feel quite unwell . I tried the progesterone onky pill, and got really unwell on that . A rash appeared that was full on open sores . I also had an allergy blood test during one of these flares and there were no signs of an allergy reaction . At times that is how it feels, a over the top allergic reaction to hormones 😏. But then I’ve had the same experience after drinking alcohol. I think I’m a strange one in all this x

[MO3S50]

I am 51. I had Horrific times during my cycles. I developed a dermoid cyst that was pretty big as well and it was removed in surgery. now that I am 51, and my periods are done, I am so glad I have no more periods as they just about did me in. Hormones are big triggers for Lupus. (As is the sun and fluorescent. Id personally look into seeing an all natural ladies clinic and look into natural hormone creams .Go all natural. and also look into getting the procedure called endometrial ablation. it doesn't help the cramps in most women , but it does help the bleeding.It could help some pain?

[Nickyt79]

I had a complete hysterectomy in november 2017 for endo, fibroids and adeno....my monthlys caused my lupus to flare constantly and due to the conditions i had and the flares i opted for the surgery.

Can I say it was the wrong decision, I was so poorly and ended up with sepsis and almost died. 10 months on im still having issues and i have had to go on hrt due to menopause also making me feel awful.

Please please dont rush in to a complete hysterectomy it is major surgery and life and body changing too.

[Lisalou19 in reply to Nickyt79]

Sorry to hear you’ve had a bad experience. My main concern is having to take hormone replacement after, as my body can not take anything artificial hormone wise.

I’ve just had a dear friend in hospital with sepsis, it has been awful. He is on an immune suppressant drug which they think contributed to the sepsis!!!!

[Fennella02]

I started taking daily soya oestrogen capsules in Jan/Feb (Tesco’s) and, although I can’t prove anything, my hormonal fluctuations are much less. The sore boobs are a distant memory and it’s just possible that they’re having a hugely beneficial effect.

[Lisalou19 in reply to Fennella02]

Interesting

I’m pretty sure it’s the progesterone that is my problem

As my symptoms always spike on the days these hormones peak

Thank you for your information

Xx

[Fennella02 in reply to Lisalou19]

I think I’m right in saying that both oestrogen and progesterone are needed to work together. It’s a very inexpensive experiment for a few months if nothing else!