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Post transplant fertility, early menopause and reduced libido.

I saw an interesting link today on the Patient and Families Facebook page to a blog by Rachel relating to the side effects of treatment and the effects on her fertility, early menopause and her libido.

https://stemcelltransplantjourney.wordpress.com/2016/06/08/day-124-first-signs-of-side-effects/

I wondered what experience people have had generally around this subject as I haven't seen it discussed before. For younger patients I can imagine it is more of an issue than for us older patients who already have a family. I was told at the time my treatment began that it was likely to make me infertile, but with three kids already that wasn't something that particularly bothered me,

That said, I do think I've seen a reduction in my libido and in my ability to 'perform'! I'm not sure whether to put that down to the transplant or my age.

So I wondered if this was something others had experienced, how it had affected them and what actions they'd taken if any to address it or have you resigned yourself to it.

Cheers,

Steve

Comments

  • Thanks for posting this Steve, its great that you have highlighted this often unspoken but common side effect of treatment.

    Thanks also for sharing your own experience, hopefully that will encourage others to do the same.

    Infertility, early menopause, loss of libido and relationship issues are common side effects and we do need to discuss it more. Raising awareness and education on symptoms will help patients realise its OK, its normal and it can be treated.

    I look forward to reading their posts.

    Best Wishes
    Hayley
  • Hey
    Yes interesting topic. My libido went out the window as soon as I was diagnosed! It's not come back.
  • I will add my two-penneth. Infertility was made clear to me as well before the transplant, but with 3 kids already, it wasn't an issue for me. The drop in libido has been dramatic though. Mine stayed pretty strong all the way through chemo and after the auto last year, but has completely disappeared after the allo - it is almost 6 months now and I can say that I have zero desire and I don't think I would have the capacity to do anything about it even if I wanted to (sorry if too much information!) which at age 37 would normally have worried me. My wife says she is not bothered and she is actually enjoying the break! The allo has not been particularly kind to me with other health issues, so I have not really focused on this, but it is surprising just how dramatically it has changed in the past 6 months. Interesting topic - I would be interested in others' experiences as well.
  • Here is my bit too lol,
    My libido didn`t change at all during any of my treatments even my transplants ,wish it had its been particularly high and a pain all my life lol.
    Sperm banking was inevitability slightly embarrassing on the NHS. Having to `produce`in the gents toilets in the Middlesex hospital was not easy lol.
    I had my beautiful daughter before my 1st transplant thankfully as i was sterile afterwards so sperm banking is a serious issue to think about.
    Going for my third transplant now i hope it kills my **** libido forever which has been a constant distraction all my life and i might finally get the chance to do something useful with my spare time ha ha .
  • Thanks for the feedback, it sounds like I'm not alone and that it is a normal side effect. It's also encouraging to hear that it is something that can be treated. In my case I would say it's not a lack of interest more a lack of ability which sounds similar to Greg.

    It's not an easy subject to discuss, particularly with your partner, but if as Hayley indicates it's something that can be treated I'd be interested to know what those treatments might be so that I can discuss it with my Consultant or GP as necessary to try and restore this part of my life.

    Many thanks,

    Steve
  • Hi all, I'm Anneliese, Patient Information and Support Manager in the patient team. Thanks so much for sharing your experiences here, it seems like this is a very important issue for people recovering from a transplant. I just wanted to let you know that we are planning to start working on some resources on sex, relationships and fertility in September. I want to make sure that anything we produce meets your needs and include some personal experiences/tips for what has helped. So it would be great to chat to people over phone/email nearer the time, let me know if this is something you're interested in anneliese.levy@anthonynolan.org
  • oh and there is more information on treatments for sexual problems in our booklet the Next 7 Steps, https://www.anthonynolan.org/sites/default/files/Next_Steps_Digital.pdf pg 96
  • Thanks Anneliese,

    The treatments mentioned in the booklet are the ones I suspected would be considered and were the type of thing I was planning on discussing with my consultant. I guess they're the traditional ones associated with this kind of problem for men but I've read mixed reports about their suitability for post transplant patients.

    When you get round to working on the resources on the subject please let me know and I'll be happy to share my experiences and as my next checkup is on the 14th September I may by then know what treatment has been recommended.

    All the best,

    Steve.
  • edited September 2016
    Bit of an update on this. I had a chat with my consultant when I had my checkup a couple of weeks back. She checked my results from my late effects test about 18 months ago and at that time my testosterone was borderline.

    I'm typing this post as I sit in the day unit half way through another late effects test which will show whether there's been a further decline, as well as a number of other checks to make sure everything else is working as it should.

    My consultant said depending on the results she would be able to decide on any treatment necessary, including HRT and the well known blue pills. I'd never associated HRT with men and it sounds quite dramatic, so I'm hoping a prescription for some blue pills will suffice.

    Steve
  • Hi Steve,
    Best of luck today and hope the results come back ok such that you can make some progress with this. Whilst it is a little down the priority list, it is still a problem for me as well and something I would ideally like to get sorted out one day so i'd be interested to hear how you get on. I never thought about low testosterone levels but that might make sense. My facial hair has stopped growing in the last few weeks and I wonder if it could be related?
    Please update us as to how you get on.
    All the best, Greg
  • Hi all,

    I finally got the results from the late effects test last week and thankfully most things are within the normal range and functioning well. I'm slightly overweight and my blood pressure was high when they did my obs that day, which was unusual as it's normally ok.

    As far as the libido is concerned they did find that my testosterone levels were low which could account for things. The solution suggested was HRT with Testogel, whatever that is. They've said I need to discuss it with my GP or consultant at my next appointment, so I'll probably do the latter which isn't till March. It's not a great concern or a priority so it can wait till then.

    I'll keep you posted.

    Steve.
  • Hi Steve,
    I am really pleased to hear that there was nothing too concerning in the late effects test and that you have a plan with regards to the libido. I suppose given everything that has to be contended with as part of the transplant process, I guess it does fall down the pecking order somewhat, but it is important in the realm of "normal" life (whatever that is!), so I hope you get to a solution that works for you. Thanks for the update.
    Greg
  • Hi everyone,
    Not sure if this is really connected with this topic or not, but I wondered if anyone had experience of gynecomastia post-transplant? This is where the breast tissue in males enlarges. I have been noticing changes in that area for about a month now. The doctor said it was gynecomastia and said he has come across it in transplant patients, I think because it is related to hormone changes. It is not causing any pain but it is tender to touch and I guess I was just interested to know if anyone else had come across it post-transplant and whether they did anything about it?
    Many thanks, Greg
  • Greg,

    That's an interesting point and it's something I've noticed myself as I seem to be developing 'Moobs' myself too! I put it down to carrying a few more pounds than I should and am in the process of trying to lose weight and tone up through weight training.

    I know from my late effects test that my testosterone levels are low and this could be another side effect of those levels that I didn't realise. From my perspective it's not painful or tender but there is certainly a pronounced enlargement.

    At the moment it's something I can live with and I will see if it eases with weight loss and training, but will be monitoring it more closely now I'm aware of it, so thanks for raising awareness Greg.

    All the best,

    Steve
  • Hi I would like to ask I’m nearly 2yrs post transplant and with a donor stem cell can there problems b passed on to me?
  • Hi
    I am the nurse specialist in patient services, thank you for posting. Prior to the donation all donors have a very strict medical and are screened for viruses and anything that could potentially be passed on to you. Anyone that is a risk to you will not be allowed to donate, so its a very safe procedure in that respect. Some of the things that can sometimes be passed on are allergies, this is not always the case but occasionally a patient might develop hay fever or an allergy that they did not have prior to the transplant.

    Late effects like the ones mentioned in this post do not come from the donor these are a result of the treatment and transplant procedure. If you have anything specific that you are concerned about please do not hesitate to contact me, my number is 0207 284 8229.

    Best wishes
    Hayley
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