I have had endo symptoms since being a teenager, around aged 13 and I am now 36, and I was finally diagnosed 2019 after lap surgery following years of misdiagnosis. I was also told at this point that it was extremely likely I had adenomyosis too given how my symptoms are, and also that I didn't actually need that much endo cut away. My symptoms have only gotten progressively worse, and especially more so the past 8 years since having my little one. It really ramped up then.
I have tried pretty much every medication now since being a teenager away from this chemical menopause. Mirena, implant, combined pills, DEPO, patches, you name it I've probably tried it. I had most success symptom wise with the POP that I took for around 4/5 years but have recently had to stop taking it as I've slowly gained so much weight on this to the point I am miserable with it and look and feel horrible, even though I exercise as much as I can (pain limited at times) and eat sensibly. Even tried special diets to no effect. It also absolutely killed my sex drive to the point I was feeling repulsed by my husband, and I always seemed to feel very anxious and upset which felt terrible.
The endometriosis pains have come back big time since stopping the POP a few weeks back but I can't cope with being so big as it's not good for my health so I had to stop taking them. (And thankfully yes, even in these few short weeks I have lost weight that I haven't been able to begin to shift for years, so at least that's something.)
I am at breaking point and can't take any more. I have no life and a lot of it is down to this condition. I am tired of the pain in my backside, the pain in my vagina, the period pains on and off randomly throughout each month even when I am not bleeding, the pains that travel down my legs, and the horrific pains I get when I ovulate that stop me even being able to walk around properly. I have been using broad spectrum CBD for my pains which really has helped but I mean, even morphine/codeine never stopped them from being bad, so I obviously still feel them and it's so hard when they flare up.
But my consultant who I've been under for years has said several times over the years I cannot have an hysterectomy without trialling this chemical menopause first. This surely cannot be true? Do gynaecologists really not let you have an hysterectomy without doing this?! It almost feels like blackmail.
I DO NOT want any more artificial hormones putting in my body, I am aware I may need some if I did go into a "natural" menopause post hysterectomy but that's different, I get that. But I don't want to "trial" anything else (especially when he said it would make my symptoms worse initially!), I just want it all out and to be done with now. I cannot have anymore children, not just the fact that my insides are knackered but my husband has had a vasectomy so I don't know why this reluctance to give me it? I am not that young either! It's clear that the endo/adenomyosis is causing all this pain, seeing as it's come back with a vengeance so why let me suffer?
I am currently waiting for an appointment with him since my GP wrote to him and asked to make an appointment with me since having to come off the POP and being stuck like this. She is thankfully supportive and can understand where I am coming from with this entirely, and she supports me just having the hysterectomy.
Has anyone else ever been told this by a gynae consultant?
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Sez1988-
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Oh Sez, I could have written this word for word! I am awaiting my consultant appointment but I agree completely, I want all of mine out. Take the lot- I know it doesn't cure endo, but it does cure adeno. Like you, I would rather not go into a chemical menopause. I'd rather not go into a medical one either. I'd much rather not have endo or adeno and go naturally, but since that isn't the case I would very much like my own way and have it out ASAP 😂
I can't suggest anything to help unfortunately, but hopefully someone else can. Just wanted you to know you are not alone x
I understand your feelings but I think there’s some wisdom in what your consultant says. I have stage 4 Endo but honestly my menopause symptoms are as bad as that or worse! Menopause can be absolutely horrific and surgical menopause is the worst of all. I have never felt as bad in my life as I feel now and I'm desperate for my hysterectomy mainly so I can then increase my HRT dose (without feeding the Endo) and feel human again. Everyone’s experience is different but for me menopause has caused extreme anxiety, burning mouth syndrome, fatigue that keeps me in bed, and exacerbated my TMJ. I know this isn't what you want to hear but I feel I have to warn you. I hope the doctors listen to you though and you get the best outcome. x
I had the decapeptyl injection for a year and was having it indefinitely until hysterectomy it helped a lot and I didn't feel too bad on it the injection aches a bit but the pain eased after a few weeks and when I came off it to try the progesterone only pill I was quite bad and had to go straight back on it it helped with my hysterectomy too they said. It's worth a go. 🥰
Hi there, I’m so sorry you’re having this experience and that your consultant is making things unnecessarily difficult for you.
To answer your question - no, your consultant can’t make you try chemical menopause before having a hysterectomy. It’s completely your choice. NICE guidelines say that hysterectomy is an appropriate treatment for pain/heavy bleeding if a patient has tried all other treatments and they haven’t worked OR if the patient refuses other treatment options. I would look up the guidelines in full ahead of your appointment so that you can remind your consultant (they should be following these - they’re designed to make sure you make informed consent to any treatment you have as a patient).
Something to be aware of if you do decide to go ahead with the hysterectomy without trying chemical menopause first - you don’t say whether you’ll be having your ovaries removed as well as your uterus. If it’s only the uterus being removed your risk of menopause after surgery is very low. However, if you’re having your ovaries removed too (technically called an oopherectomy) you will go into menopause straight after surgery. Sometimes consultants recommend you try chemical menopause first because if this doesn’t improve your symptoms it suggests that having your ovaries removed isn’t likely to help either. This might be why your consultant is suggesting to try zolodex or equivalent first. Though if you’re only planning to have your uterus removed it makes less sense.
A few things you can do that might help:
- Put your preferences in writing, stating thart you don’t consent to chemical menopause treatment. Send it to your consultant’s secretary and ask for it to be added to your medical record. This will likely make them take you more seriously.
- In writing and in discussion with your consultant, say “I don’t consent” instead of “I don’t want to”. It shows you understand your legal rights.
- Look up the NICE guidelines ahead of your appointment so that you can refer to them confidently.
- Request a referral to a different gynaecologist for a second opinion.
It’s your body and you’re the one who has to live with the outcomes of any treatment or surgery - they can’t make you do anything you don’t want to. Nor can they withhold a viable treatment option unless it poses a genuine risk to your life. All you need to do is make sure you understand the risks and benefits before you go ahead with treatment.
Best of luck getting the treatment you need (and want). x
I had to try zoladex before having my hysterectomy I was 35 at the time and I hated the zoladex I only did it for a month and then had my hysterectomy which was the best thing I ever did but I do think that legally they have to try the zoladex before doing a hysterectomy so whilst you do want it, it is better to do it just so you can have the hysterectomy I had one month of zoladex then had a total hysterectomy with everything removed, ovaries, tubes, cervix and uterus. Good luck xx
Thank you to everyone for all your replies, and I'm sorry you've all got (or had) this horrible disease. It's all helpful to read your advice and experiences!
I probably should have made it clear that I am definitely not going to have the injections, I cannot risk making my symptoms worse when I am barely even getting through the day with it when it flares up as it is, and I don't want to risk adding to that. I have always seemed to have side effects with artificial hormones as if I'm really susceptible to them for some reason, ranging from "unpleasant but bearable" to "oh god no make it stop." Damn annoying!
I also forgot to mention that every time I speak to this consultant, he's generally fine and seems to be understanding when I tell him that I do not want and will not be having this chemical menopause, that my symptoms have gone on for long enough to just have the total hysterectomy, yet when I get a copy of the letter sent to my GP, there's always a comment like "so when we do bring her in for the GnRH analogue injections" when I have made it crystal clear I do not want to do this. I feel ignored, as you'd expect. As if I am going to be forced to do it. Kind of feels like that's a type of human rights infringement or something.
Another point of note not related to endo/adenomyosis is that I have previously had two occasions where I have had to have pre-cancer cells removed from my cervix, so a total hysterectomy would make even more sense. I want it all gone. No more periods, no more cancer scares, no more cyclic pains. (hopefully)
And one last thing is that I know somebody in my family who had these before having a hysterectomy (she also had endo and adenomyosis) and she was in a terrible terrible state with them. Like really bad, never known her to be so poorly. I think she only did two injections then outright refused to have it any more. So that does influence my decision having known the bad side of it first hand, and someone in close family too. Sadly they are no longer with us so I can't speak to them about it.
Thank you for your post, haven’t gotten this far in my journey yet, sorry I am of no help to you.
Just wanted to thank you for you post as I can relate to a lot of what you mentioned.
I have an official Adenomyosis diagnosis and now on POP. Putting on weight and suffering a load of side effects so wanting to come off after less than a year, but not wanting my original symptoms back either, my next gynaecologist appointment is in April 2025.
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