Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Peach8 on March 09, 2024, 09:27:41 AM
-
Hello. My periods are horrifically painful, I'm talking vomiting, near fainting, can't walk, the usual painkillers don't touch it and the strong ones just come with other problematic side affects and I end up off work. I'm progesterone intolerant and didn't do well on utrogestan or provera. Currently got mirena but 6 months in and I'm still spotting nearly every day, I'm lucky if I get 2 days a month without bleeding. I'm also on 1.5mg sandrena plus testosterone. I've had depo injection and mini pills years ago and spotted daily the entire time I was on them so I feel like mirena isn't going to settle for me which I'm gutted about. Before I ask for removal, does anyone know what options I have going forward? I cannot go back to the period pain, it fills me with dread. GP had suggested meds that bring on earlier menopause but I don't like the sound of it. I have considered ablation but I've read some of the threads on here and there seems to be a mix of opinions on it. I'd really be grateful for any suggestions x
-
Hi
I had similar problems and have now been told hysterectomy is my only option. Trouble is they aren’t keen to do it when they deem you healthy!
My friend had ablation a couple of years ago and ended up with more problems.
It might be worth trying the drugs that put you in to menopause x
-
It's awful. I suffered every month for years. 'feminax' - 1 takes it 2-3 days B4 a period is due to ease those cramping muscles. I bet if a woman offered to pay for hysterectomy she wouldn't be refused >:( and it may well be the same surgeon who also works on the NHS.
-
Feminax doesn't help unfortunately. The only thing that touched the pain was tramadol but then I'm out my face and can't go to work or look after the kids. I feel like I'm going round in circles and will have to settle for the least crap option, whatever that is. I don't want to settle 😩
-
Maybe worth looking at the IAPMD website??
They usually help mostly with severe cyclical mood swings ( hello me) and mental health caused by hormones, but MAY be able to help with the more physical side of extreme pms or point you in the right direction for advice?
-
Also The National Association for Pre-menstrual Syndrome [NAPS]
-
Hadn't heard of either of those so thank you x
-
Hope you be some much needed advice and help. X
-
One isn't healthy if 1 has excruciating pains which impacts on daily activities, including work - time off costs the country after all.
-
Those symptoms are endometriosis symptoms and the same symptoms I had 12 years ago.
Are you getting pain with the Mirena, or just constant spotting? If no pain, I'd give it a few more months to see if it can stop the bleeding. For me, desogestrel POP stopped the bleeding - but it took many months to get there, with slow brown sludgy bleeding constantly before that and I didn't think it was ever going to work. Then it did. If you don't have pain with the Mirena and you are also tolerating the progestin, and it's just the bleeding, then give it longer...
If you are progestin/progesterone intolerant then it doesn't leave you with many options if you have endo - but an ablation would be a better thing to try before anything more drastic like induced menopause or surgical menopause with a hysterectomy.
-
joziel - the poster is getting period pains ......... :-\
-
Those symptoms are endometriosis symptoms and the same symptoms I had 12 years ago.
Are you getting pain with the Mirena, or just constant spotting? If no pain, I'd give it a few more months to see if it can stop the bleeding. For me, desogestrel POP stopped the bleeding - but it took many months to get there, with slow brown sludgy bleeding constantly before that and I didn't think it was ever going to work. Then it did. If you don't have pain with the Mirena and you are also tolerating the progestin, and it's just the bleeding, then give it longer...
If you are progestin/progesterone intolerant then it doesn't leave you with many options if you have endo - but an ablation would be a better thing to try before anything more drastic like induced menopause or surgical menopause with a hysterectomy.
Thank you. I've been told I probably have endo but it has never been investigated. I'm getting some pain with mirena but nothing major, a couple of paracetamol sort it out. Just sick of the endless spotting, it has been a very long 6 months of hoping that if I just give it a few more weeks it'll stop. Fed up with it now but if I get it taken out the period pain is horrific and I'll still need progesterone, to which I'm intolerant, the mirena has been tolerable apart from the spotting.
Are you still using POP to manage your symptoms?
-
I would ask for the endometriosis to be investigated, if it is that that is causing the pain it needs dealing with as it won't go away until it sorted.
I had excruciating period pains, pain killers didn't touch it, and after numerous trips to my gp they couldn't find anything wrong, even on examining my stomach, so I was sent to a gynaecologist.
On my first appointment with him, and after an examination, he said I have endometriosis and need to come back to the hospital the next day for an operation.
I had a cyst removed the size of a rugby ball and lost my ovary.
Don't leave it, get checked out.
-
Have you tried diclofenic suppositories? Brand name voltarol. I used these when I had surgery and siatica. Not ideal as no painkiller is but less side effects because it’s a suppository and better for nausea for the same reason. The pain killing effect is very good. I can’t tolerate ibuprofen as an oral tablet but when it’s a suppository I could. Hope that helps.
-
There might be helpful info here https://www.endometriosis-uk.org/what-endometriosis. They have a helpline. Diagnosis can take a long time so finding out as much as you can is useful.
Taz x
-
Peach8, No, I'm not on the POP any longer - although I could have stayed on that as well as being on HRT, but the desogestrel isn't approved as a progestin for HRT purposes. (There are a few small trials where it has been used at double the POP dose for HRT and it's been fine, and there are some women who are just on a single dose for HRT purposes with scans occasionally to check lining is ok.)
Instead, I'm just on a higher than usual dose of utrogestan to suppress the endo whilst I take estrogen - and it seems to be working fine. Dr Prior has done a lot of work into using body identical utrogestan instead of synthetic progestins for endo: https://www.cemcor.ubc.ca/ask/endometriosis-and-natural-progesterone
I wish I'd known about all that before because I'd rather have been on utrogestan than desogestrel. I was told point blank by 2 GPs 'there is no way utrogestan will be enough to suppress your endo, you'll need to get a Mirena'. They wouldn't give me HRT unless I had a Mirena. But I didn't want a Mirena unless it was my last option, I wanted to try utrogestan first. So I went private and got utrogestan and it's been great. I am very tolerant of progesterone though, and can take as much as anyone wants to give me.
You could look into getting a laparoscopy for your endo. The gold standard is excision surgery. If you're on FB, there are some good endo groups. There's Nancy's Nook and a few others. They have lists of surgeons who do excision. With excision, they cut out the endo from the roots so it can't grow back and it's much more effective. I didn't know about that when I had my lap, and I just had it lasered out. I think mine is mostly under control with copious progesterone now. There have been a few moments on HRT when I wasn't on such a high dose of progesterone and the pains came back. Within one cycle I got rid of them with more progesterone. My lap surgery found just a few small patches of it, no adhesions or major endo. But often with endo the pain isn't correlated with the severity of endo. There are people with no pain who are found to have extensive endo when they have surgery for some other reason. And there are people with intense pain but the endo is very mild, like mine.
And yes, before I was diagnosed with endo 12 years ago, I would throw up and pass out the first day or two of my period. I have not experienced pain like it. I was literally out of my mind with the pain, writhing around on the bed during these attacks. I think I'd pass out to get away from the pain. I found that naproxen was the best pain killer for this and if I took it as soon as I got my period, without waiting for any pain, and if I took it the whole first two days, I was pain-free. This lasted for several years and I thought I had it sorted. Until I started to get pains outside my period as well... But if you haven't tried naproxen yet you might want to give it a go. You can get it over the counter in the USA but in the UK I think it's not as available, but there are one or two period pain meds with it and your GP can prescribe it.
-
:thankyou: joziel - that's really useful. MayB Peach8 - have a discussion with your Pharmacist to see whether Naproxen or similar is available OTC and if not, can he/she recommend a Clinic to attend in order for it to be prescribed. Let us know how you get on.
I too had dreadful period pains for the 1st 1.5 days. This would fortunately resolve - until the next month :-\.
-
Joziel, thanks for such a detailed reply. I have tried naproxen and it didn't help unfortunately. Codeine made me feel very ill and tramadol has me tripping. It's "only" 2 days a month but my symptoms sound the same as yours and it's horrific, it made me dread the next month. Mirena is the best so far because I'm getting manageable pain and no heavy periods but I'm just so tired of the constant spotting. I've had around half a dozen bleed free days in the 6 months I've had it and each one of them gets my hopes up only to the be back to spotting for weeks. If I have the mirena removed then I'll be back to the pain plus the progesterone tolerance issues. I have an appointment with my doctor in a few days so I'll push for some action. She suggested pills to induce menopause but that doesn't appeal and they don't seem keen to investigate endo given my age and approach to meno. Urgh, it's never easy is it?
-
It might be worth experimenting with some other progestins along with the Mirena. Maybe you won't always need them, but they might help to stop the bleeding faster until the Mirena has had time to really affect things and then you could stop the other progestins.
I don't know what progestins you've tried in the past, but you can take any POP with HRT (it's licenced for contraceptive purposes). So that means the desogestrel POP and norethisterone POP too, if either of those work for you? You can also take utrogestan orally or vaginally. Have you tried that, both ways? Basically, if there is any other form of progesterone or progestin you can tolerate it will help - alongside the Mirena - to stop the bleeding.
You should also ask your GP to test your ferritin (blood test) as with all this constant bleeding you are probably iron deficient. Ferritin should be over 100. There is a great FB group called' The Iron Protocol' if you need to increase your ferritin. Don't listen to the GP telling you anything less than 100 is okay, it's not....
-
Thank you. I took provera with mirena for a while but it didn't stop the bleeding and my mood plummeted with all the progesterone I've tried utrogestan orally and vaginally, felt rotten orally and got raging thrush vaginally. I really appreciate your suggestions though. I will look into the iron protocol, my ferritin was last checked a year ago, so pre all the mirena bleeding, it was 30 then and I was told that was within the normal range. I really think things would be improving with the mirena by now (6 months) if it was going to and I'm fed up with it. Just don't know what to do for the best.
-
30 isn't normal for ferritin, it should be over 100. Join the group called The Iron Protocol on Facebook and read the guides there.