Hi all. I am a first time poster, but have been reading for a few months now. Apologies in advance for the longish post.
I have suffered with endometriosis and ovarian cysts since the age of 12. In the last three years the pain got so bad that I have not been able to work, and have lived my life dosed on oramorph and tramadol; barely functioning.
I have tried pretty much every treatment for endo going, and received constant migraines, mild osteoporosis and anxiety/panic attacks as a result of the treatments, but no real reduction in pain.
Three weeks ago I made the decision to have a total laparoscopic hysterectomy, with removal of both ovaries and the cervix at the advice of my consultant. It was a decision that myself and my fiancé did not take lightly. We suffered many sleepless nights and too many tears to count, thinking about what we would have to give up in order to try and give me a normal life.
Now, three weeks on, I am healing really well, I am no longer in much pain at all. However the reality of the decision I have made is sinking in. The advice of my consultant and others I know have had a hysterectomy was that the first few months post-op are a really emotional time. But I am really struggling with feelings of guilt and loss for the possibility I have given up.
I am really hoping that this was the right decision and that it will give me back the life that endo has taken from me, but at the moment it is too early to tell if this will be the case.
I was wondering if any of you have been through a premature hysterectomy, or can give me any advice about the best ways that you have found to handle and process these feelings post-op. I live in Cheltenham and despite looking, I haven't managed to find any local, relevant support groups. So I am hoping that turning to this online forum might give me an outlet and some words of support. I would be so grateful for any tips, advice, or stories that all of you strong and beautiful people might have to share!
Vicky.
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VickySmith1993
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I had a hysterectomy + BSO back in March of this year. I am a bit older than you (I was 39 at the time of the surgery) but I can tell you that everything you are feeling is normal and this is such a hard surgery. I know I made the right choice, I didn't have any choice, but that doesn't mean that it is an easy decision to live with.
It will get better, but it might get worse before it does - have you been offered any counselling or is there anyone (either at the hospital or at your GP's that you can talk to)?
Thanks so much for your reply and for assuring that what I'm feeling is normal! That's already such a help. I'm sorry to hear that you also had to have a hysterectomy. Are you finding that you're fully recovered now, if you don't mind me asking?
I have not been offered any counselling, and I've been told by my GP that I could wait anywhere from 6-12 months for any counselling options. I am in a position to pay for immediate counselling, but I guess I'm apprehensive about seeing a councillor because they can't necessarily give any advice, or may not have been through what I've been through. I guess they're more just a sounding board for me to talk through my feelings.
I am physically recovered pretty much - I had large lesions on my bladder and bowel which were excised and I still get bladder spasms at night and my bowel is a bit slow, but I guess this is only to be expected given that much surgery. I am still having days of being incredibly tired but I am living life at a normal speed now. Once surgical menopause really kicks in it does get more difficult. Have they given you HRT?
The counselling is really just a place to talk through how you feel rather than to get advice as you may find you have to deal with some really tricky emotions over the next few months. I experienced a lot of things that I really wasn't prepared for - feeling sexless, having a strange loss of gender identity, my feelings about being suddenly menopausal, and also having to deal with the trauma of the time leading up to the surgery when I was really ill, and then having to go through with the surgery itself because I had put all my feelings about that to one side in order to be able to cope with it while it was actually happening. You may not find that you need long term counselling but just having someone you can talk to in the short term who is not your partner can really help. (I found I couldn't be honest with my husband about my body and sex post surgery because he would have been really hurt by some of the things I was feeling).
Glad to hear you are nearly there in terms of recovery! I hope the rest improves very soon.
Thanks very much for your advice in terms of counselling. I hadn't really thought about it that way. I guess it would be good to get another perspective.
And thank you for being so open and honest about the things you felt after the surgery. I completely understand what you mean about putting feelings about the surgery aside in order to cope with what was happening and being ill in the lead-up. I knew theoretically that I would be emotional afterwards, I'd read articles and posts about how I would deal with grief and loss, but I guess nothing can really prepare you for any feelings until you're already experiencing them. And I guess I hadn't really thought about any potential impact on things like gender identity.
Your replies have been so helpful, so thank you again.
We do run an endometriosis support group in Cheltenham, dates at tbc however you can register your interest through our website: endometriosis-uk.org/chelte...
Thanks for your reply. I registered my details for this group back in September and never heard anything back, but I have just registered my details again just in case it was missed! Thanks again
Thanks for your posts, I'm struggling to put into words all the issues that I need to relay to my gynaecologist in the morning, I'm going to explore hysterectomy as I'm fed up of suffering. It's really hard to express the emotional impact this condition has upon us. Thanks foe sharing and hope you both recover soon
Thanks for your reply. Sorry to hear you're not having a great time either. I totally get what you mean. There is always so much to talk about in such a short appointment, and it's hard to get people, even professionals, to take you seriously. (I don't know if you've found the same thing, but pain is also really surprisingly difficult to describe or put into words!) I hope you're appointment went well!
You are not alone in feeling proffessionals dont seem to understand or take you seriously.
Its a struggle sometimes to find a professional that is willing to listen to you fully before responding. There are some out there you may have to go through alot of "frogs" (using the analogy kiss alot of frogs before you get the prince) before finding the one that turns into your "light" (asnin at the end of the tunnel).
I had a hysterectomy 2 years ago at the age of 31, it was the best decision for me at the time but i would advise you to get some counselling and support before and after the surgery if you decide to go through with it. I was not prepared for the emotional impact it had on my life and i am struggling with it now. But on a positive note i am able to live a normal life of a 33 year old now and not rely on painkillers and hot water bottles to get me through everyday! x
Please dont struggle. If you feel low talk with us on here. Even if we cant take away problems you may be facing we can lend you an ear and talk with you. X
If anything i have gone through, any experience i have had helps anyone else feel easier and unalone, im glad that it will have some positive effect. X
Thanks for the reply! I already had my hysterectomy nearly a month ago now. I was hesitant to have any counselling because I find I wasn't sure it was help. But now so many people have recommended it to me, I am looking into it.
Really sorry to hear that you're struggling, and that you also went through the same procedure so young. I totally get what you mean about not being prepared for the emotional impact. But I'm glad that it helped you with the pain!
I totally understand what u are going through. i had a tlh in september too along with removal of both tubes, right ovary, and cervix, and excision of stage 4 endo which had fused some of my organs together. I am hoping that the op will help with my physical symptoms in the short/long term but i am really struggling emotionally at the moment. Ive had very little support from the hospital from start to finish really. My partner, mum, and kids have been great but theres only so much they can do and understand. The reality of it all is finally hitting me now and im finding it hard. Its been such a traumatic few years getting diagnosed and treated correctly. Ive lost friends who have just given up along the way and Im sure my employer thinks ive just made it all up. But here i am at 37 and have had to have a hysterectomy..........not through choice but a necessity for my health and quality of life. My consultant showed me pictures of how bad the endo was again which i think will help justify the operation but even then its so much to come to terms with.
It may sound unhelpful but belive me when i say those(friends) that you lost along the way...they are friends you can do without. Real friends are those that take you good bad and everything inbetween.
Dont feel you have lost friends...feel you are gaining them now....thoe ones you make from now on and the obes that are traveling with you.
As for your employer...maybe you should highlight the fact that endo has been classed as a disease and in certain cases is debilitating and classeed as a disability. Employers should be supporting their employees...if thy dont understand they should ask or find out.
My employer asked me questions to better understand. I gave him infomation from research and discussed my symptoms and the disease itself.
I had a full hysterectomy and oopherectomy with cervix removed keyhole.
I done this privately as i was being refused it any otherway on the nhs as my age and the fact i had no children was against me.
I had not been formally diagnosed as i was being ignored by my gp and sent down pain killers and hormonal control routes all of which was not working.
They were ignoring the family history of endo. My older sister was ignored for yearsand even after having children at the husband having vasectomy they refused her a hysterectomy due to her age. By the time they reconsidered the consultant said it was the worst case he had handled. It was addeared to her internal organs and muscles including her spine. Even after the hysterectomy she still has some pain but NOTHING compared to the debilitating state she was in. She is SO much better.
This was however ignored by my gp even though i was having same symptoms.
1st private consultant ignored all i was telling her as she was only concerned with what my gp had written and advise about using the coil. Which i had refused. She even went as far as a examining me and stated "you dont have endo as i can move your womb" however she did say due to my pain at smears i would need to be put out to have the coil inserted. I had a severly tilted womb btw which also increased pain from endo.
2nd private consultant said he didnt need the gp letter and gave me the chance to tell him everything and took note of my family history. He said he didnt need to do an exam as he was a specialist and as all my other symptoms had been checked and came back clear he knew that it was endo. He gave me options and i had already decided what i wanted. He didnt judge me by age but individually. I was so relieved.
The issue of not having children was not a massive one for me. I wont lie and say i wanted them. I have 3 beautiful nieces and i love them to pieces. And my best friend has 2 beautiful daughter's and fosters. My thoughts was the following so please bare with me....It would never have been an issue with me not to carry my own child if i decided to have one (which being single i am in no rush for.) I would simply adopt of foster a child; by having a hysterectomy i would not be giving up the option or opportunity of being a mother, having the hysterectomy has made me healthier and happier and that makes me believ that if i choose to i would make a better mother because of my decision....because the child woukd be getting omeone who would be happy and able....not someone who was debilitatingly ill for the majority of the time....or someone who was unhappy. I an now look after myself...and would be able to look after a little one if they appear in my future.
I made my mind up aged 23....I wasnt able to put it into word till i was 25 was seen by the 2nd private consultant aged 27 and had my hysterectomy just 1month 2 days after i turned 28. I am now 29 and will be 30 at the end this year.
It was a personal choice which i wont regret. Sometimes i get emotional but i take a deep breath and think...where would i be now....how would my situation be if i had chosen differently.
I dont feel any less of a woman. The womb didnt make me who i was. I made me who I am; and now im happy with who i am because i am no longer suffering. Im laughing and smiling and have now got a quality if life. Im still a woman im still me...just a better version.
Dont ever let the fact you are different physically make you believ you arent you anymore. What make you who you are is not your physicality....its they 1000 of things you do, say, want, and thy memories you have and are going to make.
Just because my endo has gone doesnt mean i an not an endo sufferer i am an endo surviver and it will always be with me because it has contributed to my life....in the pain and suffering and the way its made me who i am now.
Head up.
Keep strong.
Ask quesions no matter how silly or small you think they may be.
Feel those emotion that you get....whatever they are....they make you human, you wont be the only one who has felt them and you wont be the last....
We are here for you. And even if we cant hug you or be with you to hold your hand. We will listen and think of you and send you our hopes of your future and wishes for your strength.
Here anytime for anyone for anything. (As long as its not to borrow any sugar...i havent got a car. 😆)
Hi I’m 26 and seriously considering a hysterectomy. Have you been on any pain relief since your hysterectomy? And did you have your eggs frozen before the hysterectomy? I’ve had so many chats with my family and my girlfriend about this. In pain every single day and just end up in tears every day. Currently not allowed to do my job being on any sort of pain relief and just hoping this may be a way forward.
I did not have my eggs frozen. The fact being that as i had to finance things myself I just didnt hink it was financially viable. My friend did ask me about this when she knew i was having the hysterectomy...as i am in no rush to start a family and i have no partner it didnt seem a good idea.
The nhs prob wouldn't have helped me with this...they dont help women who are undergoing cancer treatment with regard to this. The storage for eggs is a yearly price and the harvesting of them can be expensive. And im not sure of the success rate.
After surgery i was on basic paracetamol for pain relief..but didnt really feel the need to take it...although i did due to the advice from my surgeon. I have taken no pain relief since for any reason associated with the hysterectomy or its after effects. Of which i havent had many. I am on estrogen only hrt.
A hysterectomy is a big step. And although it sounds silly to point it out...its irreversible. So you need to know the facts and talk to someone specialised in endo and preforming hysterectomys. Its also dependant on medical history yours and family.
Hi, so sorry to hear about your pain! You sound exactly like I was before the surgery.
I had mine about four months ago. I was released with oxy and morphine and a whole bag of other short term drugs. But now I’m just taking daily gabapentin, which I should only be on for another couple of months.
I didn’t have any of my eggs frozen because I just didn’t feel that great about it. It felt weird and clinical that my eggs would be sat in some lab somewhere when I could adopt a child one day if I chose to. But that was a personal decision that both myself and my fiancée made together, so you may feel totally different about it and that’s okay!
Four months on, my pain has mostly gone, but there’s no guarantee that the endo won’t come back. And emotionally I’m really struggling. But it’s totally changed my life, not having to live with pain and constantly having to take morphine anymore!
I hope any of this can be vaguely helpful to you. Feel free to PM me if you want to talk in more detail about anything! If I’ve learnt anything, it’s that support from people who’ve been through similar things was something I didn’t get enough of, because it’s so unheard of at this age.
I am also 3 weeks post hysterectomy (kept my ovaries). I am 35 but having all the same fears you are. My consultant discharged me as I didn't have deep infiltrating endo, but I have so many unanswered questions - bad periods and endo has ruled my life since i was ten, so I am struggling that I have made the right decision and if i don't need to go back and see him - was it even worth it all...
Anyway, I have joined a Facebook group specific for hysterectomy support and it's so so supportive - it's called Hysterectomy Sisters UK - i'd recommend it as all the questions and concerns you have, most the women on there have had as well.
I also filled out the endo support group form for my area and haven't heard back.
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