Ok I'm at my wits end after six years of flooding through tampons in three minutes or no longer able to hold them in. I have moved on from night time pads to incontinence pads to incontinence pants and as an alternative toddlers nappies...many at the same time. I flood so much blood and huge huge clots that my iron is around 28, it has been as low as 3 but should be around 135. At 56 years of age my trouble is now having trouble turning the tap off. My last period lasted 21 days and was only stopped by Progesterone, but started again as soon as I stopped and just as heavy. My Haemoglobin crashed from around 130g/l (13g/dl) to 60g/l (6g/dl) making me severely anaemic. I was emotionally and physically a mess with a racing heart and told I needed a blood transfusion a week ago. I went into hospital only for my Haemoglobin to rise to 88 (moderately anaemic) and then discharged with no intervention. Three days later I was rushed into hospital A&E flooding and given a blood transfusion and Progesterone to keep taking. My dilema is how my Gynae wants me to choose a treatment going forward...stay on Progesterone, have a Hysterectomy or have a Uterine Artery Embolization. I liked the idea of staying on Progesterone but I don't understand when I take it, how long for and with or without a break. Everything I read suggests ten days max and not long term. What is the downside or risks of Progesterone (Northisterone) 5mg 3x/day? I have heard good things about a hysterectomy but it all feels too major to me. The UAE sounds ok but really not sure and my Gynae needs an answer. The Mirena coil is probably a no no as I don't fancy it, plus I have a bulky womb anyway with large fibroids and Adenomyosis. Help!!!
Peri-Menopause and Menorrhagia: Ok I'm at my wits end... - NRAS
Peri-Menopause and Menorrhagia
Can't really help much, but I do feel for you as a horrible thing to have to endure day in day out. It's a shame your medical team aren't doing more to talk you through the options and help you make your decision.
All I can suggest are questions to ask, that you have probably asked already! First off, have they discussed whether it's the fibroids or the adenomyosis, or both, that's responsible for the bleeding? As might give you a clue as to whether you need to think more radical or less.
I had a much lower level of bleeding than you, which turned out to be due to polyps and fibroids. And it did stop once these were removed. So for me a surgical intervention gets a thumbs up.
Maybe a way of weighing things up is to consider whether you can take things step by step? A hysterectomy is a pretty major thing to have, so could you try a UAE, and if that doesn't work, try progesterone for a while, and leave a hysterectomy as a last resort? Plus ask your team what success they have had with other similar patients with these options? Amd also comsider the impact on your RA - presumably the more major the operation they more time you will have to be off your RA meds. THey really should be giving you some guidance.....
Good luck! Hope so ething works for you, and soon.
Please read this important article about progesterone and how it should be used the best way.
Thank you HelixHelix, you have really helped.
Hi June, just to let you know that my 79 yr old MIL had a hysterectomy this summer. It was a keyhole job and she was up and about within weeks, rather than months. My own mum had hers done internally, IYKWIM and recovery was very quick for her too. They do seem to have this procedure down to a fine art these days. Much love x
Juneann, I can really emphasise with you, I too was in your situation a few years ago, I had undiagnosed Adenomyosis (only discovered post hysterectomy) I was given the Mirena coil, omg the worse thing ever to be given to someone with Adenomyosis!
To those that don't know what this is, it's like Endometriosis but unlike Endo which cells of the utererus/womb leave the womb area and attach themselves to other areas/organs in your abdominal cavity, Adenomyosis is where these cell go into the muscle wall of the uterus. So when you get your period these cells behave as normal and bleed wherever they are, you end up with extreme pain and all the other symptoms of a period.
I hope this isn't too much information.
I suffered having the Mirena coil and after 6 weeks begged to have it removed. I had Adeno for 10 years and the relief I got when I had a hysterectomy was immense, no more Pain, no more bleeding for up to 7 days. As others have said hysterectomy now a days is a more straight forward operation. I had mine almost 14 years ago, and back then I was in hospital less than 4 days, I had the usual bikini cut.
Think about your options carefully, think what's right for you. But I would advise to seriously think about Not using the Mirena.
I wish you all the best my lovely, big hugs from me XX Rie
I really commiserate with you, Juneann. I had very similar issues. Finally I opted for what became a lifesaving procedure for me. It’s called a uterine ablation. Done in an hour or less, no knock out sedation, went home after and it was a fast recovery. I don’t know if they do it there, but then again, why wouldn’t they?
Essentially they use a very hot water
Solution injected into your uterus, vaginally, and it burns out the lining of your uterus. No hysterectomy,no instant menopause, no more bad hormones and.....NO MORE BLEEDING EVER!!!!!
Actually I think I was already in menopause but everything was left in tact.
Hope this helps!
Gosh too much to think about and left with only two leaflets out of five choices which I can't even remember following my emergency stint in hospital. At the moment it's stick the choices in a hat and let a passer by pick one out - ridiculous. You have all been super helpful though and I thank you. Although least invasive my first choice of remaining on Progesterone (Norethisterone) now feels less of an option due to possible side effects. Over the last couple of days I have leaned more and more towards Uterine Artery Embolization, although I'm not sure that this method deals with the Adenomyosis which cannot 100% be diagnosed anyway unless a hysterectomy is carried out. The result I want at 56 is either a natural menopause or any remaining periods to be a whole lot lighter than the ones that have taken over my life for six years. Bed bound, children's nappies, incontinence pants, sooooo much time off work without notice...Sooo UAE, final opinion everyone please!
Hi Juneann, I can sympathise. My periods were terribly heavy for years, very embarrassing at times! I went into perimenopause at 44 Just bleeding here and there before they eventually stopped. My emotions were all over the place and that continued after bleeding ceased. So I seen gynie and was offered HRT. I tried a few different ones without much success and finally got a mirena coil. Just got it replaced recently actually after 5 blissful years. I also rub into my skin a small amount of oestrogen gel nightly. It has helped with everything. But in the back of my mind I still wonder about the connection between menopause and RA. Wishing you all the best. X
At present Oestrogen would be a mistake for me as my Gynae told me "You have quite a robust supply of natural Oestrogen". Not sure what the link is between the menopause and RA.
You can just have the mirena coil I guess it depends on each person's situation. All the best. X
The link is that during menopaus you become estrogen dominant and estrogen is one of the strong players in inflammation. Progesterone caunter acts the estrogen when you are young ( usually) but does not seem to be the case in many of us. Only afterwards have I understood that my e/p balance has been estrogen dominant causing many problems that sadly enough I only understand at hinsight:(.
Riedenise can I ask why you or your Gynae thought a hysterectomy was best for you and not a less invasive procedure i.e. Uterine Artery Embolization or simply Progesterone tabs/injections.
The Mirena coil would be a problem to fit due to Adenomyosis so not an option.
Just as well since MC does come with a lot of risks. Has been drawn from market as I understand in Australia. Hope anyone thinking about this will look into the risks.
Thanks for highlighting this Simba. I have heard some real positive experiences however my memory goes back to around 1980, yes nearly forty years ago. A close friend of mine (I was eighteen and my friend was around forty - we worked together) developed an infection which years later I think may even have been sepsis, as blood poisoning was mentioned. She was rushed into hospital very poorly, had the coil removed and had to take time off work to recover. A horrible time.
This is one of the products that pharma has lounged and that doctors still keep offering ( decreasing amount though!) that really makes me mad. The whole effect of the coil is based on an ongoing inflammation. Why in the world would any woman risk her health by doing this!
Having a hysterectomy was one of my better decisions. Getting rid of the disabling flooding bleeding was wonderful, and the reassurance afterwards that it was just the fibroids was a weight off my mind that I didn't know I had.
But please make sure that you don't expect your body to bounce back immediately - I went back to work too early thinking I was fine, but I was still anaemic and tired.
But explore ALL the options and decide what is right for YOU. None of us can do any more than give information based on our own experience.
I will weight it all up old-timer, thank you. Since the bleeding wouldn't stop I've been put on Progesterone for a couple of weeks, not sure what to expect when I stop it. I was going to stop it early so that I have some tabs left and so when I do next bleed and if it proves unmanageable I have something to stop it whilst the GP gets me another script. I'm holding off making a decision because I keep thinking, "What if that was the last month?". If I did finish then I would not choose medical intervention.
juneann: I just saw your post from a month ago. If there is a possibility you have Adenomyosis, I can tell you the best thing I ever did in my entire life was have a total hysterectomy. Mine was done vaginally and I was discharged 1 full day after the surgery, or maybe two. I had mine done in 2006, when I was a few days shy of 48 years old. I had been having terrible periods sometimes as long as 12-14 days and then often; sometimes only a week or two in between them. It was miserable. I carried extra underwear with me and pads, tampons, you name it. It was a very, very hard decision for me to make. BUT, I wish I would have made it much, much sooner. Come to find out I had Adenomyosis, which neither the Dr. nor I knew about. She told me after my hysterectomy that it was so bad the pathologist had her come look at my uterus because at first they both thought I had some kind of very rare cancer. She also told me, and this is the most interesting and important part of my story...that if I had not had the hysterectomy I would have continued bleeding into my old age because of the way Adenomyosis works. So, essentially, she said I would have bled even after senility. I can not tell you what to do, but only advise that that decision was the best one I've ever made. No more carrying extra things around, no more practically running to the bathroom at work, or in public, and sitting on the toilet for long periods of time. No more ruined clothing and underwear, etc. And, no more severe cramping and discomfort. Do you what you think is right for you...but, remember you may bleed for the rest of your life (if what my doctor told me is true and I certainly trust and believe in her). Bless you, I hope you can make a decision soon. All the best to you!
Tessko thank you for your reply which I have found really helpful and informative. My Gynae appointment has been brought forward so I shall now go in armed with further knowledge - thank you. As I understood it Adenomyosis along with fibroids stop causing problems after the menopause - who knows? I'm still taking oral Provera since my last blood transfusion yet I have just started bleeding today. I'll keep you posted.
Do read this too before you see your gyne. You also might want to change your Provera to safer natural progesterone.
Thank you for your kind response. I probably ought to read more about adenomyosis. I do know fibroids get better when you get past menopause. I'll see if I can find an explanation somewhere that backs my doctor up. She was excellent. A few years ago she moved to a bigger city to practice that is about 30 miles from me, so I just see my Internal Medicine doctor now. I wish you the best of luck and hope your darned bleeding lets up. I'm so sorry you have had to go through this. I suffered from endometriosis from my late 20's until it finally got somewhat better a few years before my hysterectomy. I hope you get to feeling much better and can make a decision. We each have to do what is right for us. Best to you in your challenges and do keep me posted! Thanks. Have a good rest of the week and enjoy the weekend if I don't hear from you before then!
Sorry. juneann, one more reply and I'll leave you alone, LOL. I found an interesting article in "Endometriosis News" about Adenomyosis and Endometriosis. Some of it is a little medical language usage heavy, but it does show that both Endometriosis and Adenomyosis can occur AFTER menopause. Disgusting, right? How unfair... Anyway, here is a link to the article which is based on a study done in Italy, I believe.
Tbh at your age these days a hysterectomy is over & done with in a few months..my neighbour ( 53) had one in June after a Mirena coil & all sorts of hormonal interventions.......she (&her husband ) are both very happy with the outcome. She went through similar experiences to your situation,
She says she wishes she'd made the choice years ago,
Thanks AgedCrone the research goes on.