Why do drs say my naturally degenerating fibroids are bad when a UAE would make fibroids degenerate?

Posted , 9 users are following.

I am 49 years old and perimenopausal (my periods have become more frequent, although I have missed two periods in the last 12 months.) I have had fibroids at least since my early 20s. (I'm originally from the US, where women have regular gynaecological health checks.A the time, gyn found a pea-sized fibroid he at first thought was a poo. ) After an ultrasound several years ago, I was told I had the uterus the size of about a 16 or 17 week pregnancy. Until very recently, I have had no symptoms other than a big belly.

 In the past year or so, I have noticed that I have brief, intermittent pain occasionally. It feels like the nerve pain you get if you hurt yourself on your coccyx, except from the inside.  I have pedunculated fibroids, so they move, and I can make the pain go away by changing position. I also occasionally have pain when defecating, although I am not constipated. (I can usually clear that up with exercise or a nice long walk.)

I decided to see my GP just in case, as I hadn’t had my fibroids looked at in a few years.   A blood test revealed that my CA 125 was high, so I was referred to a gynaecologist. 

However, when I saw the gyn, I learned that while my CA 125 was above reference range, it was nowhere near the level seen in people with cancer. (I have no family history of cancer,  by the way.) 

 After being given another ultrasound, I was advised that I might be a candidate for UAE. This surprised me, as I had never been given this option before and thought my fibroids were too big for it. It seemed like a good idea, so I was scheduled for a pelvic MRI to determine whether the UAE was a possibility.

The MRI showed that I was not a candidate, because I had two or three (sorry, I don’t remember) pedunculated fibroids, each around 5 cm diameter, of which I believe at leaslt two were degenerating. I thought that this was fantastic, as the fibroids were dying on their own, and I didn’t have to do anything. (The MRI also showed numerous smaller fibroids.)

I was scheduled to have a second MRI three months later, to see if the fibroids were growing.  Several weeks after this second MRI, I received a letter from the gyn, which said that my fibroids were indeed growing and that I had some fluid in my pelvis which had increased over the three months. She had “taken the liberty” of scheduling me for a CT scan of my chest, abdomen and pelvis. I had the CT scan last week, and today I just received a call saying that a gyn wanted to see me tomorrow. (I had to postpone till next week.)

By the way, I got my period the day after my second MRI, and was on my period during the CT scan.

Also, I have asthma and have trouble breathing when I am lying flat on my back, so I had difficult doing the breathing for the MRI and CT scan. (I normally sleep with lots of pillows.) Plus, at the second MRI, I had a cold and I had an allergic reaction to the Buscopan, which may have hindered my breathing even more. so I wonder if that might have caused unnecessary concern. (I was given a chest x-ray after the 1st mri but never heard anything back. I assume it was normal.)

I have been offered a hysterectomy, which I don’t want unless it is absolutely necessary.  My understanding is that it is normal for fibroids to grow during perimenopause and for degenerating fibroids to swell, and that pelvic fluid is normal, (I don’t know by how much the fluid has increased) so I don’t understand what the problem is.  If I’d had a UAE, I would be intentionally causing my fibroids to degenerate; I don’t understand what the difference is.  I have no  fever or other symptoms that would indicate infection or sepsis . (As I said, I am pretty sure that the intermittent fibroid pain that isdue to pressure on a nerve - I can relieve it just by moving it.)

I have researched and discovered that the risk of a rapidly growing fibroid becoming cancerous is less than 1%. However, the risk of complications from hysterectomy is greater. (I have never been pregnant except for an unintended pregnancy that ended in early  miscarriage when I was 42. I know that increases my cancer risk somewhat.)

Is there any reason why I should be concerned and consider a hysterectomy, considering that most of the time I am symptom-free and the symptoms I do have don’t affect my life? I am in good physical condition and very active. Why am I being told that my degenating fibroids are bad when I was previously offered a UAE which would intentionally cause fibroid degeneration? Do many women who have UAEs end up having hysterectomies after, anyway? My plan was to just wait until menopause and let the fibroids die slow, natural deaths.

 Also, my understanding is that a CT scan provides a less accurate picture than an MRI, so I don’t undersand why I was given one after the MRI. When I called the gyn's office to ask what the gyn saw in my second MRI to make me need a CT scan (I was concerned about unnecessary exposure to radiation), I was only able to speak to the gyn's secretary, who told me that the dr wanted to see more of me than my pelvis, and that I "needed a CT scan.")

 My periods have gotten less regular and for the most part, more frequent, but that is normal for a woman my age.  Based on my family history, it should be at least another five years or so before I reach menopause. (I became pregnant, unintentionally,when I was 42, but miscarried.)My concern is that the doctors are treating me as though I am post-menopausal, where bleeding and growing fibroids would be a real worry.

Another issue is that while I don’t have a family  history of cancer, I do  have a family history of heart disease and osteoporosis, and I understand that even a partial hysterectomy (because it decreases blood flow to the ovaries) could increase my risk of both. . Any advice on what to say to the doctor at my next appointment? If there is a risk of cancer, I would like to ask for a biospy first, but I don't know if that is possible.

2 likes, 15 replies

Report / Delete

15 Replies

Next
  • Posted

    astropuppy,

    you are a very intelligent lady and you've done a lot of research.

    like me and lots of ladies you are exasperated at the unconsistancy of the information you are receiving.

    i am sure you will keep the medics on their toes and wont be fobbed off.

    lets know how you get on.

    Report / Delete Reply
  • Posted

    Well I was told it was the fibroids that don't look completely solid - so I suppose by that they mean some degeneration - that are the ones "they have trouble with".  And I was told that by a gynaecologist who specialised in gynaecological cancers.  But, as you say, the risk is supposed to be less than 1%.  And, as you also say, embolisation causes the fibroid to degenerate.  So perhaps not much difference.  But there have always been different schools of thought on this and a lot of traditional gynaecologists were against embolisation at first, because it would leave the fibroid in you whereas the old school of thinking was it was better to remove it.  I can't advise you one way or another as although I chose an embolisation in the end I'm not sure whether it was the right decision or not and it was very hard to get information out of the medical profession. But perhaps my experience sheds some light on what you were told and why you were told it.
    Report / Delete Reply
  • Posted

    Well, that explains it. Yes, when large fibroids degenerate slowly, they degenerate from the inside out, because the blood supply can't get to the inside, so the inside consistency is dfferent from the outside consistency.

    It seems to me that these 'alternatives' to hysterectomy aren't always alternatives, as they often result in the need for  hysterectomy anyway, so just another unnecesary procedure.

    For example, my sister had multiple myomectomies (she bled so badly she couldn't leave the house), and after each one the fibroids grew back,  until she had been through so many operations her uterus was completely covered with scar tissue, which is dangerous in itself, and she needed a hysterectomy

    And now I've just learned that by disrupting blood supply for fibroids, UAE can also result in the need for a hysterectomy.

    Then there are those women who are looking for natural solutions to shrink fibroids. I don't know if any of these work, but if they do, they might end up causing large fibroids to degenerate, also resulting in the need for a hysterectomy. 

    As any medical procedure has some risk, it seems to me that you are better off either doing nothing (assuming your condition is not life threatening) or just havinj a hysterectomy right away.

    Report / Delete Reply
    • Posted

      i remember a few years ago, seeing a sheep in the field dragging its uterus behind it.

      i immediately called the farmer as i'd never seen anything like that before and was worried about the poor animal.

      this got me thinking about our female ancesters.

      what a terrible time they must have gone through.

      these days we have educated ourselves via internet to know what questions to ask the docs.

      and we realise they dont know fick all.

      this doesnt help any of you lovely ladies in their quest to get their life back on track.

      but i just thought i'd say it anyway.!

      Report / Delete Reply
  • Posted

    Followup -

    I saw the gynaecological oncologist today.  He treated me like an intelligent adult, listened to all my questions and answered them honestly, which was very important to me.

    The gist of the matter is that I have one fibroid that has grown a great deal in three months, based on two MRI readings over that period. I don’t remember the measurements exactly, but something like 6x7x6 cm to 7x9x8 cm, which is a huge growth in a short period of time.  In addition, under contrast on the MRI, this fibroid is showing up differently than the others. The doctor described it as being more “brightly coloured” under the contrast. I asked if that meant something like a different density, and he said yes.

    The CT scan didn’t show anything different from the latest MRI, which was a big relief for me.

    The doctor said that it probably won’t become cancerous, and I might be able to just leave it and wait for it to shrink with menopause  (he scored lots of point with me by being honest and not pretending that I was in immediate grave danger), but, because of the small possibility that it could become cancerous in the future, he suggested that I have a complete hysterectomy, including removal of the ovaries. This way I can be sure that there are no traces of cancerous cells anywhere.

    I haven’t said I’d definitely do it, and I’ve got to sleep on it for at least a few nights, but at the moment I’m tending to think that I want the hysterectomy, the reason being that if I don’t have one, every time I have a minor ache or feel slightly under the weather,  I’ll be asking myself, “Do I have cancer?”

    When the nurse called me after the CT scan, which was supposed to check what was going on outside my pelvic area, and asked me if I could see the doctor the next day, I started worrying that I might have metastatic cancer. I do not want to go through that again. It also broke my heart to see how much my husband worried about me over the past week. (Turns out it was just an efficient nurse wanting to ensure patients got seen quickly.)

     I’ve got surgery tentatively scheduled for April 20, just because the doctor’s schedule is so busy that I needed to reserve the date, but I’m not bound to the decision. If I haven’t responded in three weeks, the nurse is going to contact me to check. 

    I know several women who are past menopause and are in amazing shape, so I’m not worried about my body falling apart without my ovaries.

     

    Report / Delete Reply
  • Posted

    Hi astropuppy. I have just come across this site and I have similar questions to you. I have had severe stomach cramps for a number of years and finally went to see my gp last December. My stomach at this stage is extremely large. I am 4.11, 42 years of age and usually a size 8. When I saw my gp she said my stomach was so large she was worried I had ovarian cancer. She booked me in for an ultrasound 2 weeks later. The gyn who did the scan said I had numerous fibroids and needed an mri to find our what was going on. I had the scan on 21st Feb and I got my report back saying I had about 10-15 fibroids, the largest one being an exophytic subseros fibroid 21cm long and 8.5cm wide, which shows signs of degeneration. The report did not show the size and type of the other fibroids but I immediately thought that was good news in that I may not need an op as my body is naturally doing what UAE does and it is dying anyway. I have since tried to find out more info about degenerating fibroids and it seems the opposite is true.

    I have so many questions and have yet to see my consultant. My appointment to see him and discuss the results is on 21st April, two months after I first saw him and six weeks after I received my results. I was hoping to have a laproscopic myomectomy but doubt if this would be possible due to the size of the largest fibroid. I would also like to know the type and size of the other fibroids so I can get an idea of how complicated an op might be and whether I would want to put myself through all that. I just don't know how I can contact the radiologist or who would be able to give me this info.

    Unfortunately, I can't advise you on questions to adk your dr but I can tell you that I have a friend who had large fibroids and decided against an op as she was near the menopause. Her fibroids have definitely shrunk since she reached menopause. Hope you get some answers

    Report / Delete Reply
    • Posted

      Jackie, what do you mean by 'the opposite is true'? How did you find this out? (I don't know if we can include links in our posts.)

      I am almost the same size as you. 5'0", size 10 (possibly an 8 without the fibroids). The gyn/onc who saw me felt my stomach and said that my fibroids actually aren't that big, they are just big in compared to my body.

      Report / Delete Reply
    • Posted

      Possibly wrong choice of words. What I mean is that after spending hours searching the net for info on degenerating fibroids, I came across a couple of stories where the writer has been told her fibroids are degenerating and the only option is a hysterectomy as soon as. I still do not understand why it can't be left to degenerate on its own. A friend of mine who is a nurse says it may be that only parts of it are degenerating and too slowly. In addition, the parts that are degenerating may cause infection if left in the body. Not sure how true this is or where to get answers.
      Report / Delete Reply
  • Posted

    What bothers me are so many women are being told to do this or that too shrink fibroids - whether it is to take an herbal remedy, take a medicine or go through a medical procedure - and if these things work and they do actually start to kill off some of the fibroid, it seems they could in fact be making their condition worse.
    Report / Delete Reply
    • Posted

      Yep possibly. There just is not enough information. The more I think about my friends theory re Infections from degenerating fibroids the more I doubt this. UAE causes degeneration without having an op. I have not heard any stories of infections being caused by the dying tissues left in the body.

      It looks like we will have to wait and see our consultants to get any answers

      Report / Delete Reply
  • Posted

    Nice line of reasoning, Astropuppy! It is where I'm at too wink
    Report / Delete Reply
  • Posted

    Now I have a humongous > 1700 ml subserosal fibroid. It has grown from ~300ml to this huge size (unless my 1st US was mistaken). There are 4 other fibroids. All 5 are degenerating (hyaline degeneration; the big one is starting to have cystic degeneration). I have surgery kind-of scheduled for January. I took all sorts of herbs to "make it shrink" and I think that maybe growing and degenerating is the way these medicines work!

    Maybe I am crazy, but I started to think "let's see go lasts longer, me or this fibroid". I am just so afraid the surgeon will rip off my uterus. Look up "Post Hysterectomy Skeletal and Anatomical Changes", damn!! I do not want to go through THAT! Seems worse than having the huge "pregnant" belly I have right now.

    So, the question lingers: does degeneration pressage shrinking??  

     

    Report / Delete Reply
  • Posted

    I am happy to have come across this site.it seems as if the Dr. In the UK are slightly different in opinions that the Dr.'s here in the United States. I was told that I was not a canidate for UFE because of a purdunculated fibroid the size of a grapefruit on the outside of my uterus would cause a severe infection call peritonitis. The reason being is because when the fibroid moved it can twist and cut off blood supply to other major organs.this is the reason why UFE is unsafe to have depending on the size and the location of the fibroid..when a fibroid suffers from iscemia..lost of blood supply naturally it's totally different than the man made way with PVC particals.after all unless you have the fibroid removed permanently you will always find yourself going in for another procedure one after another unless your uterus is completely removed.if you want some good information and get inside you can go on the Myo Clinic at Cleveland Clinic website
    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up