My endo is just small patches (suffered in pain since my early teens, now 32 years old and only diagnosed last year) but the pain I am in daily is extremely severe. I was on GnRH for 6 months and I was like a new person! Consultant took me off it to see if my merina coil would kick in and help the pain, if not then it will be a hysterectomy for me. Sad to say I am falling back into that horrible painful place, so looks I will get the procedure.
I asked about having it cut out etc. but he said this wouldn't help me. I have 2 brilliant children aged 9 and 4 years old and my a Husband and I have completed our family, so my worries are not linked to having more children. It's more of putting myself through the procedure and it not having an effect on the pain and I also worry about the early menopause symptoms. Also, I am overweight and I hear it is really hard to lose weight after a hysterectomy, is this true? I am working on losing it just now but not sure i will lose enough before the op.
Sorry it's so long, this is the first time I've joined any forums lol. Any help, advice or experience would be greatly appreciated. Thanks
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Ka123
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Hi Ka123, so sorry to hear you are suffering sounds really grim.
It is a really difficult topic as it's a very personal decision. I hung on til my early 40's and had a hyst (I had adenomyosis - endo in the lining of the womb wall). But this was only after having lots of excision surgery for endo elsewhere. I waited til I was completely sure that it was what I wanted - had GnRH with add back HRT to see how it would be. The hyst has been great - no regrets. I have had to accept living with daily pain, however - after so many ops on my bladder, there is just a lot of scarring. So, life isn't perfect but I am glad I no longer have periods! And the bloating is so much better too. Good luck with making a decision, it's really good to find out lots of info. Hope things improve for you xx
Hi dream_in_pink, thanks for your reply. Glad to hear you had no regrets and you were able to hang on, in hindsight, would you have had the hysterectomy when you were younger? I don't wont to have to deal with this for years just to end up with a hysterectomy anyway, these are precious years with my kids and I've missed out on do much already. I think I've already set my mind to the hysterectomy tbh, just looking for some success stories to confirm my decision lol thanks again x
Hi there, I had a hysterectomy a few years ago in my early forties due to endo and adenomyosis. I lost my ovaries as well so have been on HRT (mostly Livial) since. Definitely no regrets about losing my womb but have had some pain since. They think this is due to adhesions from the operations I've had. However this pain, though annoying, is fairly mild - the other endo related pains (the really extreme ones where my husband was always offering to call an ambulance!) have now gone, even though the surgeon had to leave a bit of endo on my bowel. I've had a few bowel problems, again probably due to adhesions.
The main problem for me has not been the hysterectomy but losing ovaries. I've had no menopause symptoms on the HRT but have lost libido, and general 'get up and go' due to loss of testosterone. Also feel less like a woman, if that makes sense. Even though Livial has a testosterone effect it's obviously not enough to make up for what I've lost so consultant has suggested I get some testosterone gel from GP. It probably varies for person to person, but it's something to be aware of especially as you're a bit younger than I was. Personally I would recommend keeping at least one ovary if possible and if it's not then discuss these sorts of side effects with your consultant.
I haven't noticed any difference since the op re weight gain. I could do with losing a bit, but then I always have!
Thanks for your reply jenniejoe. Thanks great you have no regrets, I think after suffering with endo a bit of mild pain is acceptable! I understand what you mean about feeling lesser of a woman, that is something I've thought about as well. It is a big decision, but I'm sitting here writing this whilst on pain relief but still in pain and a hysterectomy seems the better option than having to deal with this for any longer than I need to. I hope the gel works for you. Good luck x
What type of consultant are you seeing? General gynaecologist or accredited endo specialist. The reason I ask is he said that cutting it out wouldn't help you which sounds a bit odd to me and makes me think that he doesn't feel capable to do surgery on you or he has a good reason for saying this. Did he explain his reasons?
When you had GNRH were you on HRT too? If not, did you have any side effects - hot flushes, foggy brain etc.
Also, what type of hysterectomy was he recommending? Just the uterus or everything including ovaries?
I went on a diet in January and I was propelled by sheer terror about my endo and what would happen to me! I lost a stone very quickly and now I'm eating more healthily. It's made a big difference to my mood and overall wellbeing so I would really encourage you to stick with it.
Hi brownlow thanks for your reply. I'm not sure if the consultant is an accredited endo specialist or not, he is the surgeon that diagnosed my endo. In regards to his refusal to cut it out, he just said it wouldn't help. I did get some side effect in the gnrh, hot flushes were the more noticeable effect and something I dealt with and I didn't need any HRT whilst on it. Well done in losing weight, I have put on over the past few years and especially during the 6 months on the gnrh, consultant said that the weight had nothing to do with the treatment, yet my own gp said it was, he had seen it previously with other patients. I am due to go to a weight management clinic this week, so hopefully this will help me. Thanks again for your reply x
I think it's important that you check out the credentials of your consultant. See if you can find his name on the accredited list of endo centres here bsge.org.uk/ec-BSGE-accredi... Or on an aspiring centre list here bsge.org.uk/ec-BSGE-provisi... (they don't always get approval!) If his name does not appear, are you attending one of the hospitals listed. If so you need to check if he is connected to the endo centre team which I should think he would be. You can also look up his name on google and find out more that way. Some gyneas say the specialise in endo which is not the same as being an accredited endo specialist. They are accredited with good reason; endo is a complex disease.
If he is not with an accredited centre I strongly suggest that you return to your GP to get referral to the appropriate specialist i.e. an endo specialist. Your consultant can also refer you to one. From reading many women's experiences here on the forum, it appears that 'general' gynaecologists are often unskilled and lacking in knowledge when it comes to endo. The fact that your GP agreed with you that weight gain is due to GNRH is a good sign and means he will most probably listen to you when you request referral to an endo specialist. If he refuses you need to get very demanding. You can cite the fact that the gynae disagrees with the GPs interprestating of GNRH causing weight gain so therefore he doesn't know what he's talking about!
GNRH caused me to put on weight and I don't put on weight easily.
I have learnt on this forum that excision surgery is more effective than laser surgery. Excision cuts the endo out and seems to last better. Laser surgery burns it off but it comes back more easily. I wish I had known this...before mine was lasered! Perhaps the reason he said it wouldn't help is because there is a chance it will grow back. However, I know which I would prefer...I'd rather get it cut out and possibly grow back than whip everything out....which incidentally does not always solve the problem. That's just my personal view. If the ovaries are not removed you still ovulate and the endo can come back. If the ovaries are removed you lose their protective aspects like prevetion of heart disease and loss of bone density. HRT helps a bit but there is then the risk of endo returning with HRT.
hi there ive just joined this group and am writing to you as i am in similar situation as yourself. I am 28 yrs old and have had endometriosis for past 5 yrs ive had 3 laps and the first one only ever showed endometriosis which they removed. I suffer extreme amounts of pain an discomfort and over the past 5 yrs have been thru public system off going to ed depts and getting pain management and awaiting outpatient clinic appointments they take time and this time round im over it. as ive aged from the start being only 18 yrs old. I dont want to keep facing this popping up every few years and having to be tolling on my husband myself and our two children. my children are young 6 an 9 and i know myself i cannot keep doing this. im on pain meds but am concerned about taking them for so long as i know it isnt good for my body. The ed physician suggest the idea of hysterectomy to me last night and past conversation with the gynae team im under have said no its too dangerous doesnt cure it and i was too young. Last night the dr told me any age is ok for the operation however you have too speak up use ur voice and suggest it too your gynae and see the figures and whether they believe it may help minimise my pain and condition. i see your fairly young as well and likewise im done with my family as i medically cant have anymore kids an just want to try and fix - minimise this from happening every few years as its debilitating and impacts on my every day life. I feel so stuck and havnt been told much or any forms of treatment which i may be able to try. have you any ideas or advice from your experiences?? thank you and i hope you get sorted soon.
Hello, I also have a kid. I had my endo lasered off, pain returned. Zoladex with add back hrt. Pain relieved but horrific side affects, so just different pain. I have now seen a brilliant endo specialist. He advised cutting out endo as when burnt off there are nodules remaining under the surface. A hysterectomy without doing this May mean the remaining endo remnants feed on the oestrogen and grow back despite hyst. I am having a hysterectomy at the same time but leaving my ovaries so I don't have 15 years on hrt. Think it also depends where your endo is. Mine is in pouch of Douglas and ligaments of the uterus so ovaries not the problem. I agree on getting a 2nd opinion from an endo specialist rather than a gynae. Good luckxx
Try googling hysterectomy as well & chat to your GP it is really helping me get my head round it all x
Hi Ka123, I had total hysterectomy on 15th January 2014, been battling with stage 4 endo and adenomyosis for over 29years (I have no children). Since a week after the operation I haven't had to take any painkillers whatsoever, which is a dramatic change for me as I was always taking painkillers all day, every day before I had the operation. I went into menopause straight from surgery (not having HRT as it encourages any left behind endo to continue growing) and the only symptom I have had is a couple of nights feeling slightly warmer (not hot or sweaty) than usual, but that was weeks ago. I've also lost just over a stone in weight, even with me being at home all day snacking and eating 3 meals too. Hope this helps and you get sorted soon xx
Hi there, I have two children 14 and 11, I'm 35 and I'm due to have surgery on Saturday, I'm down for radical excision on my endo in pod, my tubes are blocked and clubbed I have suspected adenomyosis too, so I'm down for a hysterectomy if need be, I've consented to everything knowing that he will removed whatever he needs to. Im fed up with constant pain, never doing anything with my family can't arrange anything in advance, so do you know what! I've got nothing to lose. Hopefully I might gain my life back. Xxxxx
Contact the hysterectomy association they have been a great help to me. I am 42 and on the waiting list for LAVH (laparoscopic assisted vaginal hysterectomy) with the removal of both ovaries due to extreme pain mid cycle that I have had since I was 15 but has got much worse since the birth of my son almost 11 years ago. Best of luck with what ever you decide. Xx
Not been on for a while! After lots of research, questions and various visits to my GP and consultant, I've decided to go for the hysterectomy. For me the pros outweigh the cons. It will be a full hysterectomy - ovaries, cervix and womb. I'm booked in for next month to have it done. Thanks for all your advice and support and hope you all are staying strong 💛💛 xx
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