Hysterectomy questions

Hello Ladies just wondering if anyone in a similar case to me can offer up some advise.

I am 37 years old and this year was diagnosed with Endro, following a laposcopy to remove my ovarian cysts was told that the surgeons could remove them as my bowel has fused over my uterus and ovaries.

I am now on a 6 month course of Zolodex and have been told that the only option to correct this is now a Hysterectomy.

I have no children and do not qualify for NHS IVF due to my husband already having children.

I am pretty certain that I want to go ahead with the surgery as my insides are all messed up and I can't have a family naturally. My specialist is hesitant to do this as he has concerns over how I will recover emotionally after the op. Has anyone been in a similar boat to me that can provide some perspective or advise?

Many thanks Josal xxxxx

9 Replies

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  • Hi hun.

    I'm really sorry to hear about your situation you are in with your endometriosis.

    I was diagnosed with Endometriosis and Adenomyosis in march, I am chronic pain living on morphine it's making me so miserable, the specialist has advised that the only cure for Adenomyosis is a hysterectomy.

    I am due to have me my follow up on the 15th June, I am going to try the prostap Injections like they have suggested doing before my hysterectomy.

    I consider myself to be very lucky as I had my 3 kids when I was younger which I'm so glad about because I don't think I would be able to have them now if I was trying.

    I think they have to consider the emotional impact having a hysterectomy is going to give you. My mother had to have a hysterectomy at 30 also and she actually had to have some therapy before they would agree to do it.

    I think because you don't have children you need to be really sure that you aren't going to regret it after as it is such a big thing, I personally feel very emotional about a hysterectomy, when they told me I would need one after my laparoscopy I broke down in tears I think partially because it made think how lucky I was to have my kids. But the other part of me feels like I'm loosing part of my feminity, and then I also have pain constantly which Is why i am going to have one because I have been in pain for so long.

    I hope this helps I know your circumstances are different to mine but I always find hearing someone else's point of view help.

    Jo xx

  • Thank you Jo it is a help to hear other people's perspective. I feel very strongly about wanting to move on have had a terrible couple of years with anxiety and depression and this was the icing on top of the cake. The good thing is I have 6 months to see how things go and mentally prepared self for any decision I make. Hope all goes well with your surgery and that you make a speedy recovery

    Josal xxx

  • That's ok you are welcome. I have found it comforting to hear from others who are in the same situation.

    I can complete understand why you would want all of this resolved and to move on with your life.

    Yes thats good that you have this time to consider all your options to be sure that you are making the best decision for yourself.

    Thank you, I hope that you are able to get this resolved and are pain free soon xx

  • Hi,

    I'm sorry to hear about you're situation and I'm going through something very similar myself. I'm 37 years old with no children. I was diagnosed with endo 10 years ago and adenomyosis just over a year ago. I 've tried every medication possible and had 7 laparoscopies to remove endo. I also had one of my ovaries removed as it was so messed up after a cyst developed on it and it kept sticking to my ureter.

    They fitted me with my 2nd mirena coil last April but I'm still having periods every 2-3 weeks that last for 10-12 days with terrible pain all the time. I saw my specialist today who in all honesty has been great with me and given me as many options as possible but we're now at a point where they're rapidly running out. He's trying me on a bit of a radical drug treatment called Letrozole which is normally used to reduce oestrogen in cancer patients which I started today. There's about a 50% chance of it working and if unsuccessful I'll be going for a hysterectomy as it's my last resort. Believe me I've tried every avenue available to me. This decision is not one I'm taking lightly or based on anything a doctor has told me. You have to make sure you do all your research on it and make sure you pursue all options open to you (even if that means getting a 2nd opinion). The decision has to be yours and yours alone so you need to know you can handle the emotional side of it and the fact that you'll not be able to have your own babies.

    I know for me that if this doesn't work in the next few weeks then I will definitely have the hysterectomy but I've had the last 10 years to consider it and come to terms with it and I've seen numerous specialists. If you even remotely think about having you're own children I suggest seeking another opinion from a different gyneocologist as some are better than others with wider knowledge, skills and experience. What one says is inoperable another may be able to operate on.

    It's a terrible situation to be in and extremely physically and emotionally draining. I'm not sure if my situation or advice helps you at all. I hope it does even in a small way.

    Take care

    Mel

  • Hi Mel - thank you for your reply, hearing other peoples experiences does help me a lot. I have pretty much resigned myself to the fact that I cannot have a family of my own but thank fully I am blessed with being part of a large family so there is no shortage of cuddles from little ones available. To be honest I have no idea how I will deal emotionally, I dont think that anyone can really figure that one out. The good thing is I trust my Gyny specialist so really I just need to mentally prepare myself and make my decision xx

  • I am sorry to hear what your going though but it is not surprising . I was diagnosed with Endometriosis in 1996. I had conservative surgery and had my son then my youngest daughter both in 1998. My son VBAC and my daughter natural . After I was complete with my family I opted for a hysterectomy, but left one ovary in place back in 2004. I do not regret the hysterectomy at 38 yrs old but I do regret leaving the one ovary in place. I am now going back to the very same surgeon that did my conservative surgery for her to do a lap. I suspect I am suffering with Sciatica Endo .. I will know once I get scheduled for a lap .. my appointment for evaluation is June 17 then not sure how long before scheduled for lap. I will come back and let others know diagnosis after I know . It is important to share stories so others might learn from ... it .. My pathology report at my hysterectomy did confirm diagnosis of both Endo and Adeno.

  • Hi, I'm so sorry to hear that you are faced with this decision.

    I'm just wondering are you being seen by a BSGE accredited endo specialist?

    Best wishes, Jo x

  • Hello,

    No I do think so he is a gyny specialist

    Josal xx

  • It might be worth considering seeing a BSGE accredited endo specialist as they will still do the hysterectomy if that's what is needed and it's what you want but they will have the added benefit of having the expertise required to excise (ie cut out) any endo found also at the same time reducing the likelihood of symptoms continuing post surgery.

    You can find a list of accredited centres at the following website and you have the right to request a referral any of these nationwide centres - it does not have to be your local one:

    bsge.org.uk

    For reference I had a total hysterectomy (ie cervix and uterus removed) for adenomyosis (for which hysterectomy is a definitive cure for unlike endo) and excision

    surgery for endo 12 weeks ago. The surgery took a BSGE accredited endo specialist almost 7 hours and the majority of that time was spent meticulously removing my endo. The hysterectomy part took less than an hour. Previous surgery for my endo undertaken by general gynaecologists only took a maximum of 2 hours and they used a laser to burn away my endo. Burning away severe, deeply infiltrating endo is ineffective as research shows it only removes the top of endo. It does not remove it from the root meaning, much like a weed, it grows back. Excision surgery is now considered the gold standard of treatment within the field of endo.

    All surgery carries risks but abdominal surgery also carries the risk of adhesions. Adhesions can cause pain and issues in themselves. Therefore it's really important for endo sufferers to

    limit the

    number of surgeries they have and one way of doing this is to ensure they have the best excision surgery available to them in the first instance.

    Best wishes, Jo x

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