Mild hyperplasia but with family history

Good morning all, 

I am looking for some more information following a hysteroscopy and biopsy; I am quite confused and would really appreciate first hand experience.

A recent biopsy showed mild hyperplasia of the womb which would normally be treated by the Mirena coil but a hysterectomy has also been mentioned.  

I am undecided about what to do as my mother had womb cancer at the age of 55 (I am 53).  My sister and I feel strongly that this was related to the then prescribed HRT she received.  This was over 20 years ago and she was a slim very healthy woman with no previous medical issues.  Some of her attending staff did admit this was likely at the time but it has been shut down as a reason since.  In addition, she had a rare type of cancer - a leiomyocarcoma which metastasised in her brain.  My consultants have both dismissed my mother's experience as it was so rare, one has assumed she was overweight which she wasnt', and both have outright told me that won't happen to me as it is rare.  However, my feeling is, this is not rare in my family.  My mother was an only child and I have no other older female relatives for reference.  

Despite the current advice I am getting, I have always been advised not to take HRT by doctors and have chosen to manage the menopause through lifestyle changes.  This has worked to a degree and I feel I am sort of on top of the worst symptoms now.  Unfortunately I seem to have/had all the menopause symptoms but on referal the menopause clinic they just advised I have HRT.  I am not keen to do this as a parent of two children, for me the risks outweigh the benefits.  

I know that the coil is a form of hormone therapy and I have mixed feelings about this.  I also know that a hysterectomy is likely to take me backwards having worked so hard for years to self manage my menopause symptoms and that I would almost certainly be told to take HRT after a hysterectomy which I don't want to do if possible.  

I am going round and round in circles trying to decide what to do.  My father in law is a retired surgeon and he has never intervened with any opinions unless asked by he has told me emphatically I should have the hysterectomy.

Does anyone have any similar experience or any advice they could offer?  Thank you so much if so!

  • Hi,

    I certainly cannot offer you medical advice. If it were me though, I would take the hysterectomy. (I am waiting for mine). It is a shame you don't know a little more about your Mother's exact cancer, but I am guessing from what you are saying that it was fuelled by oestrogen. I don't think you are 'told' to take HRT after a hysterectomy, but for some women it can help them deal with the sudden drop in oestrogen. You are slightly further into menopause than I am - I am 48 and have had no symptoms of menopause. But, I have been bleeding for 18 months, so it is assumed that my oestrogen levels are high - which is why I had the mirena coil (which my body didn't agree with) and take oral progesterone - to 'oppose' the oestrogen. Not that I have seen an endocrinologist or had any hormone levels checked. 

    From what I understood when I had my hysteroscopy and D&C, the standard treatment for hyperplasia is a mirena coil and it can actually be reversed. When there is hyperplasia with atypia, the treatment is hysterectomy. The progesterone is supposed oppose to the oestrogen and stop the lining from proliferating. It doesn't actually work in my case. I had the mirena coil for 8 months as well as taking a double dose of oral progesterone and was still bleeding. However, I had no hyperplasia. It said 'disordered prolferative endometrium'. 

    So, I guess your choice is, you could try the coil and have a biopsy as a follow up at whatever time they schedule. They would be able to see if it is working and if not, then you would probably go for the hysterectomy then. 

    Or, you could have they hysterectomy now and be done with the worry. I see your concern is the HRT, but if your womb is removed then it cannot fuel any cancer there. Obviously there is breast cancer that can be fueled by oestrogen. My sister in law has recently had that. She has to take oestrogen blockers now, so was pushed straight into menopause and is 45. So, women can live without oestrogen and if you have already experienced the lowering of it so far, then it might not be much worse than what you have already been through. But, I'm not saying you are at any risk of breast cancer, so a low dose might be ok for you. 

    Not sure if that helps. Personally if I had experienced the trauma of watching my Mother go through endometrial cancer I would go for the hysterectomy. I'm sorry you experienced that and it must make this situation so much more difficult for you. 

    Another plus point. The overwhelming thing I hear women who have had a hysterectomy say is that it is the best thing they have ever done. Once it is gone, you will never have ovarian cancer, endometrial cancer or cervical cancer. 

  • Hi,

    Thank you for your reply, I appreciate you sharing your experience.  

    Interestingly, on my father's side, there is quite a lot of breast cancer.  My grandmother had the BRAC2 gene which I have been tested for and don't have.  He was also an only child though so there aren't a lot of relatives and in my experience, medical professionals do tend to look at commonality when they make decisions.  

    I'm sorry the coil didn't work for you, I feel like I might have a similar reaction but that's just a gut feeling.  I react strangely to a lot of medication/interventions so my preference is to avoid them but that is probably clouding my judgement.  I hope you don't have to wait too long and that you have a good recovery.

    I have read that my mother's cancer isn't hereditary but that the genetic factors causing it can be, it's very confusing!  I do feel like I want to just have the operation most of the time and get it over with.  I know it doesn't give any guarantees of not having other cancers but I feel like it would give me some peace of mind.  When I was waiting for the BRAC2 results I decided straight away I would have a hysterectomy and mastectomy if necessary and I was happy with that decision, obviously it didn't come to it.

     

     

  • Your welcome,

    When you are saying about the factors causing the endometrium cancer that are hereditary, are you talking about lynch syndrome? That can also be tested for.

    The reason the coil didn't work for me is because I get severe cramping from IBS. I have been on 24 hr slow release mebeverine for 4 years now. However, when that coil was fitted I was out of action for a month with severe pain even on the tablets. I actually suspect that my IBS cramps are actually uterine cramps. After a month they did settle down. However, I went for an ablation 8 months later. It couldn't be done as my womb was too anteverted. (Very odd, as I have it in writing from 2015 that my womb was retroverted). The surgeon wrote that the previous coil was almost out, but fitted another (I was under anaesthetic) and stated that it would likely be pushed out too. So, I got a lot of cramping again. They have taken it out now and I am managing on the oral progesterone which has reduced bleeding mostly to streaking. I have no problems with the progesterone. It seems to agree with me. I have also read that oral progesterone can be used for hyperplasia when the coil doesn't work. However, most women don't get the severe cramping that I am prone to. My Mother had a copper coil for years with no problems at all. 

  • Hi,

    I'm not sure about the details of what is hereditary and what are genetic factors, it's something I'm trying to collect more information about.  I find it extraordinary that there is so little commonly known about women and their reproductive systems.  I started listening to the 28ish Days Later BBC podcast which is fascinating, if you haven't heard it it's worth a listen.  

  • Thanks, I'll look it up. Until last year, I didn't know that much tbh. I have been fortunate not to need to know, as I hadn't had any problems. It can be pretty awful for some women from an early age and quite devastating when fertility is affected.