Post Hysterectomy Support

[catsrule40]

Hi

I have been through a pretty bad time with Endometriosis in the last few years after we decided to start a family. Turned out i had stage 4 (and beyond!) endo with a 15cm chocolate cyst on my ovary and stuck to my bowel. I was advised having a child would be very difficult and that a full hysterectomy would be the best option. After being on Zoladex for over a year during the pandemic while i waited for surgery (to stop cyst getting bigger), I eventually had my surgery which involved having a temporary stoma. I ended up staying in hospital for 3 weeks last Dec as I had complications with an infection etc. Sadly it all took its toll on our relationship and my partner left me the day i came out of hospital.

I'm 42 and would've loved to have had a family. Within 3 years i've gone from the excitement of trying for a baby to trying to come to terms with not being able to have children, my partner leaving and dealing with early menopause. To top that off as a result of my first surgery I developed a massive abdominal hernia and needed further surgery at the beginning of this year.

What I've found is that there's not a lot of support available post hysterectomy. It just felt like it was a case of 'you're all fixed now , be on your way'. When emotionally I'm far from fixed and i'm extremely depressed. The endo problem has been fixed (well I hope) but I wasnt offered any emotional support after my surgery. Does anyone know of any support available for women coping with never having the chance to be a mum. I know there's plenty of support for women who have had miscarriages or lost children but not much for those of us who never even got to be pregnant

[Brambledoggy]

Oh you poor thing. I can’t help because I’ve never been in that position (didn’t want kids) but I do know there WILL be help out there, it’s just knowing where to look. Maybe local GP surgery as an initial phone call? I know anyone reading your heartbreaking post will try to help because there are some really nice ladies on here. The only thing I can relate to was my “current” partner and I split up last summer (long story but mostly he was unsupportive and inconsiderate of my endo) and he ended up sleeping with someone else while I was broken and on my knees hurting like hell with crippling endo pain and trying to cope with a new puppy, which I eventually had to give away and almost finished me off. I don’t get why some men are so cruel. Your ex is despicable and unable to cope with such a strong women, so he took the (weak) easy way out and his timing stinks…..A lot of ‘em do. You’re well rid of him. But I hear your hurt in your post and just wanted to say you’re not alone. Someone else will chip in here I’m sure. You’ve been through so much. Hugs. Nina.

[catsrule40 in reply to Brambledoggy]

Thanks Nina for such a lovely reply Its nice to know I'm not alone.Sorry to hear about your relationship breaking down too. It is so difficult isnt it as the pain just wears you down and makes you so tired. I was conscious that i wasn't paying him enough attention and my libido just went out the window but hoped he'd stand by me but he was getting to know someone else while i was going to bed early in pain and whilst i was in hospital going through all sorts of trauma he was cheating on me. Some men are just very weak like you say but I'm sure better things are to come xx

[Brambledoggy in reply to catsrule40]

Ah, that’s rubbish for you... Really pants. I get it’s really tricky for men who deal with women with endo, (or anyone, partners, parents etc dealing with debilitating illness) but honesty costs nothing. It’s better to be faced with the truth, than deal with duplicity. I just absolutely know life will deal you a better hand now he’s gone. X

[Avourneen]

I'm sorry to hear all you have been through. I am in a similar position about fertility. I was hoping to have children and had been through fertility treatment only to find out a yar later that my stage 4 endo and adenomysiosis would make it impossible. Fortunately though i have an amzaingly supportive husband who brings me great joy. I can't iamgine how hard it must be to have gone through all this without someoen to love and support you.

I had always wanted to have children but I came to terms with not being able to have them a few years ago. I think I basically decided I could be sad and depressed about it for ever or accpet that in life we don't get everything we want. So I decided to just make the most of what I do have and of the things I enjoy in my life and accept that I got a short straw on this aspect of life.

But as I say this is far easier to accept because of my partner. I read a very good book on how to deal with depression it was a 12 step CBT course and it really helped me to see things in a different light and to reduce negative thoughts and to find a more positive view on my own situation it was a work book. I cannot remeber the title but it was amazingly useful.

By the way catsrule things do change. Before I met my husband I had the most awful boyfriend who was incredilby jealous,controlling and ended up being violent.Losing a man who cheats on you is not a loss.If someone loves you they wouldn't cheat so you have just got rid of a negative person who was holding you back.

Give it some time, work on yourself and manage your depression and sadness and you will grow strong. Once you grow stronger crap men won't seek you out and you will meet someone fantastic and that will really help. I think nasty men have a sixth sense for women who are struggling or vulnerable and make a bee line for them. You don't need a child to be whole. There are many many things in life where you can fulfil yourself in other ways.Send me a message if you wnat to talk privately but know for sure this horrible period of your life will pass and soon it will just be a harmless memory.

XXX

[catsrule40 in reply to Avourneen]

thank you so much for taking the time to reply and with such a lovely, inspiring message You have a really great attitude towards our situation. It really helps to know there are others that are going through something similar and that this sh*t time can't last forever. You're absolutely right and I need to start focusing more on what i do have and the possibility of what i could have in future. I'm certainly getting pretty tired of wallowing in self pity and feeling like a victim. It all just takes time to process doesn't it I am having weekly counselling and have read so many self help books i think I could train as a counsellor myself haha. I will take a look for the CBT 12 step book though - that sounds really useful. xx

[Lilyjack]

Have you tried the fertility network? I remember seeing something when I was going through treatment for my children and I did read something about coming to terms with not being able to have a child.

I think you may need to grieve. You’ve had a lot to deal with lately and having gone through delayed grief myself know it’s a harder road than dealing with it when it’s fresh.

‘Not everything should be compartmentalised to deal with when you have the time’ was what I was told!

You could also try contacting talking matters which is a mental health helpline they may be able to point you in the direction of targeted help

I wish you all the strength to get through this which I’m sure you have 💛

[catsrule40 in reply to Lilyjack]

Thank you for your kind message I will take a look at the support you suggested. Take care xx

[Nikkky]

Hi, I just want to send you some hugs as you’ve been through a dreadful time. I echo what the other ladies have said regarding your partner leaving. You will be better off without him as he clearly was not a support to you when you needed him most- although that doesn’t take away the hurt you must be feeling. Also, it must be such a difficult time coming to terms with the fact that you can’t have children and seeing a different future. I’m sure you’d benefit from speaking to other women in a similar situation or arranging some one-to-one counselling. I don’t know of any support groups but I’m sure there’ll be something out there. It might be worth looking at the Daisy Network website. That supports women who go through premature ovarian failure, which I know is different but there’ll be women on there who have not been able to have children due to early menopause. The main thing now is that you focus on yourself, be kind to yourself and slowly take the time to build yourself up again. The mental and emotional impact of a hysterectomy is underestimated and dismissed by the medical profession, which is so wrong. After my op I was just left to get on with it and I wasn’t prepared for the suffering that results from living without hormones. I know your situation is understandably making you feel low but I just want to stress the importance of replacing your hormones to help with your mental health. Have you started on HRT since your op? If not, it is something you definitely need or if you’re already on HRT you might need to increase your oestrogen dose and start testosterone xx

[catsrule40 in reply to Nikkky]

Thanks Nikkky, that's really helpful I'll take a look at Daisy network. I'm so glad I'm not the only one who feels that the medical profession aren't doing enough to support women after their hysterectomy. I've spoken to quite a few women who have said the same recently. A couple of my friends didn't even have a follow up appointment after their hysterectomy. Yes, I've been on Tibolone since my hysterectomy. Still trying to gauge if its suits me. Because of everything else going on with me, its difficult to know how much of the way I'm feeling is down to hormones xx

[Nikkky in reply to catsrule40]

The aftercare is either non-existent or very poor and unfortunately you don’t find out until afterwards as you’re just focusing on getting through the op. When you feel up to it I’d really recommend you look at the Balance-menopause website as it’s got lots of up-to-date info and podcasts on menopause & HRT as well as specific stuff on HRT after hysterectomy and endo. It’s by Dr Louise Newson (you might have heard of her or seen her on t.v recently). I’ve found it so helpful as g.p’s and gynaecologists don’t receive mandatory training in menopause and HRT (crazy!). Tibolone isn’t HRT-it’s a synthetic progestogen that has some oestrogenic effects. I guess it’s been prescribed as the gynae is conscious of any oestrogen HRT flaring up remaining endo. It isn’t the best option as it’s synthetic, has some risks and is more likely to cause side effects such as depression. Like I said-they are not trained in HRT and surprisingly are not experts in hormones either (they only deal with our reproductive organs). You can actually safely take body identical HRT, which would be a separate oestrogen and progesterone. The progesterone helps to suppress any remaining endo. This is the gold standard in HRT as it’s replacing what your body would be producing anyway. The other advantage is that you can safely increase the oestrogen dose. You might need a higher dose, especially as you’re still young and after a hysterectomy. All of this is on the Balance-Menopause website. It’s a case of telling your g.p what you want. I know you’ve got other stresses in your life at the moment but if you get some proper hormone replacement it will help you mentally and emotionally to cope with it. A lack of hormones has a devastating effect on our brains. We need oestrogen (and testosterone) to make brain chemicals such as serotonin (our happy hormone). I found that before HRT I couldn’t cope with anything, felt anxious, fearful, depressed and lost interest in life. I wish you well x

[catsrule40 in reply to Nikkky]

Thank you Nikkky - that's really helpful advise. I will definitely look at this website. I think because of everything that has been going on, I just trusted what the gynae was prescribing and didn't think about it so much but i don't remember any medical professional explaining that Tibolone wasn't HRT. I found that out myself only a couple of weeks ago on google! When he spoke to me the emphasis was on the risks of osteoporosis if i didn't opt for some sort of HRT because of my age. I recall it was a quite a rushed conversation whilst i was still in hospital.I will make an appointment with my gp to discuss as well once i've done a bit more homework myself :). thanks again and take care x

[Nikkky]

Yeah, we trust that the ‘experts’ are going to be up-to-date with it all and give us the correct advice. I was the same and whilst I sometimes blame myself for not knowing more, I remind myself that I’m not a health professional and why would I know everything there is to know about hysterectomy, menopause and HRT! The correct info wasn’t even really out there anyway. The health professionals aren’t necessarily to blame either because they’ve been fed incorrect info for years. They’ve been made to wrongly fear oestrogen due to the flawed W.H.O study 20 years ago. The mistake they make is that most of them don’t question anything. Good luck with the homework! x