April 11, 2018 at 10:24 am #322657
Hi, I am new on here and really unsure what to do. I have had a mirena coil fitted last year, for I think, the 4th time over the last 15 years or so. I have had some success with it, despite the fact I have multiple fibroids for the last 31 years or so. This coil was fitted because I was having bleeding over 2 or 3 weeks with clotting and pain after a few years of nothing with the previous coil. They had given me an MRI scan which fortunately showed no worrying thicking of the lining of the womb, but the fibroids which I did have were growing and I have multiple small ones. even though I am 56. So another coil was fitted, but after about 6 months of no bleeding, everything has kicked off again and my stomach is bloated, I am having bleeding with some clotting and symptoms of IBS. I feel I must be a candidate for a hysterectomy now, as i have had the fibroids removed (myectomy?) about 8 years ago, but they have come back. I feel I should be clear of bleeding now I am in my late fifties, but unfortunately I don’t know if I have been through menopause, as I have not suffered any hot flushes, etc. Any advice would be welcome.April 11, 2018 at 1:45 pm #322658
Hello miss muffet and welcome,
I would suggest you post on the monthly forums – March and April particularly as the ladies are all chatting away just now – I’m sure some of them will have had similar issues and will be able to give you some advice. I’m sorry I have no personal experience of this but I’m sure that there are ladies on the site who do – good luck xxApril 11, 2018 at 3:09 pm #322660
I’m afraid I can’t really comment about most of your concerns as my hysterectomy (in Jan 2018) was done for very different reasons (pre-cancerous cells). The reason I’m replying is to say that, as part of my initial investigations, I had a specific blood test to ascertain if I was definitely through menopause (I was) so I just thought I’d let you know as I hadn’t realised there was such a test available. Hope this info helps and also that you are able to find the best course of action/treatment.
KatieApril 11, 2018 at 9:06 pm #322663
Hi @miss muffett
If you look on the Februry and March forums, you will see my story is similar in a way to yours.
I was on the pill for years before I had my children and in the years after. When I was 26, and newly married, I was quite a skinny minny and my flat tummy suddenly started to protrude. My old fashioned doctor decided I had been pregnant (despite being on the pill, and purely because I had very blue veins everywhere. I later found there was another reason for that …) and had had a ‘spontaneous abortion’. I wasn’t really happy with that so asked to be referred to a gynaecologist. A scan revealed fibroids, at a quite young age apparently, and he said if I wanted to try for children, I should really get on with it because the likelihood of miscarriage was really high.
To cut a long story short, I had two successful pregnancies. With the first, I had several scans showing a few fibroids, but one grew to the size of a grapefruit, and caused much consternation with the student midwives, who thought it was a head, and I was having twins! I had a minor haemorrhage after the birth, which led to the decision that with my second baby, the only option was a hospital birth. The fibroids grew again, but not as much, and I unfortunately had a retained placenta, which was removed manually in theatre.
Busy life ensued, the fibroids shrank, I went back on the pill and had no problems until about 12 years later, when I had the kind of bleeding you describe. I had a hysteroscopy and ultrasound, the gynaecologist could not see definitively what was causing the bleeding (fibroids still present but not bleeding) He offered me the Mirena as the least invasive option, but if the bleeding didn’t stop, then he recommended hysterectomy. In a way I wish I had had it then….but the Mirena was a miracle worker, and all bleeding stopped. When the time came for it to be changed, I had a blood test that showed I did not yet appear to be menopausal, however the doctor could not retrieve the Mirena!
I was referred again to the gynaecologist who scanned me to locate it and said the fibroids were present but degenerating. He changed my Mirena for a new one, and again no bleeding.
About a year after that I started the perimenopause, with all the associated symptoms. This coincided with a really stressful period in my life, and so my doctor suggested HRT. It worked quite well, and the plan was that after a couple of years we would reassess. Due to the stress continuing, I became very anxious and depressed (I unfortunately have a history of this) and I ended up in hospital with chest pains. A lovely, very thorough, doctor did many tests, and confirmed it was a stress reaction. One of the blood tests though threw up unexpected results, and I had to return for repeat tests.
My doctor said ‘I think you have polycythemia, an unusually high red blood cell count, but don’t worry,it’s treatable’ and he referred me to a haematologist. In the meantime I googled the condition and it said ‘it is a slow growing form of bone cancer’ ! I freaked out and didn’t read any more! The haematologist was lovely and said there could be other reasons for it and I would have more testing. In the meantime we chatted through my medical history and when I said I had fibroids she said ‘ahhh’ . Apparently in very, very rare cases, fibroids can affect blood in this way. The only way to know if this was the case was to remove the fibroids, which had grown huge, in some part we think, due to the oestrogen in the HRT.
Eventually, after many tests, cancelled appointments etc, I had my op on 26 March, where my uterus (the size of a watermelon!) was removed, alongside my Fallopian tubes and ovaries, because, as my gynaecologist said ‘at your age (54) you don’t need them any more and it reduces the risk of other nasty things happening’
He said he could have tried embolisation but I would probably end up having a hysterectomy anyway. As much as I dreaded an op, I knew the time had finally come. My stomach was as big as a 5 months pregnancy which looked embarrassing at my age, made me tired and breathless and none of my clothes fitted!
The op was nowhere as bad as I expected and I am recovering well. I have further tests with my haematologist booked for July, when my blood should have settled following loss during the op. If the red blood cell count is still high, putting me at risk of stroke, blood clots or heart attack, I will have to have bone marrow testing, to see why it is producing too many red cells. If it has come down following removal of the fibroids, my gynaecologist will think it’s a medical miracle – he told me as soon as I went in his office that he had googled the instances of it happening and it was so rare he had never seen it in his whole career. I want to prove him wrong!
I think in your case, hysterectomy may be the best option for you. You don’t want to have any more physical symptoms than necessary when you do reach the menopause, not to mention the unpredictability and pain of the bleeding and bloating. I don’t think it would be unreasonable to ask your doctor to refer you to a gynaecologist to get some tests and talk through your options. There is loads of information and advice on here, and real women’s real experiences which have certainly helped me through it.
If you have any more questions, pop back on here, there will almost certainly be someone who can help!
Penny xxApril 15, 2018 at 3:45 pm #324097
Hi Missmuffett, some people are really luck and avoid all the menopausal symptoms, and you may well be in that happy bunch of ladies. One good way of telling would be to ask your GP to do what’s called a blood oestrogen test – whilst it’s not wildly accurate, it can be a good indicator, especially if a couple are done over the course of a month or so. Also, it’s not uncommon for fibroids to grow back after a myomectomy, so you certainly aren’t unusual with that. Perhaps another chat with your GP might be helpful at this stage? Linda
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