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Endometriosis UK
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Last fkn straw!

Why on earth, I don’t understand why not one consultant will give me a hysterectomy??? I wouldn’t let my worst enemy suffer like this. All I want is a bit of a life back nd if that means taking it all away shouldn’t that be my decision. I’m fuming right now 🤬🤬🤬🤬🤬

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Hi Tammy, I’m sorry to hear you’re at the end of your tether 😔

Could you ask for a second opinion or ask to be referred to be a specialist endo Centre? In case you haven’t heard of these before this website: bsge.org.uk/centre/ lists all the specialist endo centres in the U.K. you may find you have better luck there.

I know how frustrating it is to not be listened to regarding a hysterectomy, I’ve been asking for one since I was 21 and they’re only just agreeing to it now and I’m nearly 29 :(. I have found private consultants with endo specialisms are far more sympathetic and willing to listen.

I hope you find someone who will really listen to you soon xxxx

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Thank you for your reply. I have seen 6 different gyne doctors. I will look into that web address thank you so much and my husband suggested to go private but you just see doctors from NHS so I can’t see how it could be much different but I could be wrong.

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Private would be more inclined to help because you’re paying them. It’s an expensive procedure so NHS won’t do it unless they have to. I’ve ended up private because any NHS appointment I’ve been to just says wait 3 months and see if it gets better-this is to try for a laporscopy. My private gynae offered me my second lap straight away. I know it’s different. I’m 22 and still in a lot of pain post lap and my private gynae is telling me have kids ASAP and he’ll do my hysterectomy when I want it. From my experience private is better because they have the money

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Just read other comments. Yes hysterectomy isn’t a cure for endo- mine has been recommended because I have adhesions sticking down both my ovaries and there’s nothing he can do except a hysterectomy as the adhesions are so thick

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Would I just get in touch with a specific specialist hospital myself or will it have to be done through my GP?

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I’ve had private and NHS care for endo and the difference in treatment is remarkable in my experience. Privately you are seen a lot quicker, your consultant will spend a lot more time with you, your laparoscopy or treatment is booked in quickly and to suit you, the care you receive in a private hospital is amazing as is the after care. If you are able to afford it, at least partially (paying to see a private consultant initially in the hopes they *may* be able to refer you back into the NHS) I would thoroughly recommend doing so.

The way to go about it would be to identify which private hospitals you have near you (such as BMI but there are other groups, in East Sussex for example there is the Montefiore Hospital in Hove run by Spire Healthcare which is amazing) and then have a look under their gynaecology team (sorry can’t spell that word) and see if anyone has a specialism in endometriosis. You will need to get a referral from your GP to the hospital you choose. In my experience I have been able to call up the GP practice and just explain I want a referral letter to be sent ASAP to the hospital and this has been done without seeing the GP. You then call the hospital and ask to be booked in to see that consultant and you will need to agree to pay their consultation fees which are in the region of £180-£200 for an initial consultation.

I hope that helps but if you have any other questions please let me know 😊 xxx

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That’s great Catness thank you once again!

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If you can, definitely go private. The care I've had since going private has been amazing. The nhs is fantastic for many things but for me endo is not one of them.

Hope you get sorted xx

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Really sorry to hear that you're suffering so badly and it seems no one wants to help.

The reluctance of the consultants around giving you a hysterectomy may be because a hysterectomy isn't a cure for endo. I would think they are reluctant to remove your ability to have children with a treatment that isn't a cure and may not actually help, if it does help it may only be for a short time, the endo could come back, the pain with it. That said, I'm not medically trained, I'm just going on the research I've done about endo since my diagnosis.

Have any of the docs you've seen really explained why they won't give you a hysterectomy? It might be worth seeing if you can get to see one of them, or at least speak to them on the phone and asking (if you haven't already).

You could go private, but they may be of the same opinion as the consultants you've already seen in the NHS. The only difference I can see is that they might have more time to listen to you and talk you through the reasoning behind not wanting you to have one.

I'm sure they're genuinely not trying to be deliberately unhelpful by not giving you a treatment you want. I do completely understand your frustration, but there will be valid reasons for their reluctance. However, it is up to them to properly explain those reasons to you.

I really hope you get the answers and treatment you're looking for and need xxxx

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I know my dr won’t give it to me until he has exhausted all options. I take zoladex and my pain goes to 0, so I can’t see a hysterectomy not working for me but because I’m only 28 and no kids it’s apparently not an option.

They also don’t do it because of the risk of getting sued. I read Lena Dunham’s article after she had hers and read loads of articles after that and it seemed that women were suing the drs because they didn’t give them the right information, so they try and protect themselves. With this I think you are suggested to keep going back to the same dr and begging over and over.

As for that, have you been on zoladex? It puts you into menopause so would give you a good idea if taking it out would be a good option for you.

Also I went private to get diagnosed so a. Always pro private to get stuff done :)

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Hallo, so sorry to hear of your frustration. I thought I’d jump in because I accidentally discovered Zoladex following an emergency removal of a chocolate cyst. I kept getting Zoladex in between IVF cycles, then when IVF didn’t succeed, I decided I didn’t want periods anymore and to continue with Zoladex because I felt it had given me my life back. My gynae didn’t want to know and I felt he was going to push me towards other options, like the coil, which I absolutely did not want.

I felt trapped, frustrated and on the edge with my mental health.

I asked my GP to refer me to a BSGE clinic in London (NHS but they can do private too), and it made such a difference. In one day, they performed all sorts of tests and then I spoke to the head honcho. He asked me what I wanted, listened and gave me the time I needed. We agreed that I could continue with Zoladex until my natural menopause age, which would be approx 10 years. This is highly unusual but I was a childless 40 year old who had exhausted all other options. I felt like I’d won the lottery but I knew there were risks with this options. I decided I preferred living with these risks rather than the symptoms of my endo.

I agree with Clairey007 that a hysterectomy isn’t a cure, then again there is no cure for endo. If you haven’t already, do your research about the health risks associated with a hysterectomy, plus the other options such as long-term Zoladex, the coil, etc. Once you are referred, the specialist should know you are serious about your choice of treatment, regardless of your age.

Best of luck! Xx

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Hi, sorry to hear you are suffering and feel that noone will help in the way you think you want them to.

I have definitely been in your position through the years however my consultant is really good and always explained fully the reason he was declining a full hysterectomy.

I think you need to look at your condition and research treatments out there for endo. If you can list the ones you've had and exhaust the possible ones then you have more of a case for a hysterectomy. However, if you have tried Prostap or Zoladex or something like that and it didnt work then that is usually used as an indicator that a hysterectomy wont work.

I think you also need to be aware that a hysterectomy wont cure your endo and will come with some huge risks for the rest of your life. Including a reduction in your expected life span, an increase in your risk of heart problems, cancers and other really horrible diseases.

Im 28 with no kids and I am currently 1 week post total hysterectomy and bilateral removal of ovaries and tubes. I have been asking for this for a good 8 years.

If you want to message me for more info then Im happy to tell you my experiences.

Xxxxx

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Hiya Tammy sorry your having a tough time I have been the same for a long time I only have adenomyosis I say only I'm still in constant pain and my painkillers and hot water bottles and tiger balm are my best friends right now I was waiting for my gynecologist to mention it the last 4 times but after trying and failing everything they have thrown at me I lost my shit I went to see my GP told him I have no life on 8 very strong painkillers a day feel like taking more but can't he mentioned surgery so back to gynecologist I finally didn't let her speak I said I'm not trying anything else I want a hysterectomy and guess what I've been referred I can't believe she just said ok there's still hope for you Tammy keep at it XX Tam.

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Hi. Oh I am so sorry to hear this. But for me it shows I am not alone with it. I am not allowed one either. I have cried about this so much for the last few weeks. I know it's the answer to having my life back. This condition is disabling and no one understands it. Half the time I don't think the consultant understands it some of the stupid things she says like this condition doesn't give you back pain. You are right you wouldn't wish this on anyone. Also the what is taken out in a hysterectomy you can live without. So why leave you with it when you don't need it. I know it's upsetting have they explained to you why? In my case it's risk to life is too high. I hope you get things sorted and you don't have to suffer too much while you do. Take care. Xx

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If she thinks it doesn't give back pain she hasn't a clue about the condition and I would tell her to do one and go to someone else

I am so sorry that you are having to experience this as well.

If it was a man opting for a serious treatment, I guarantee that no medical professional would question any of it as much! And he would get his desired treatment

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Hi. Thank you. It's crazy what we are expected to go through. She is not the only consultant to say no to the operation. But now she wants me to back to square one and try things that didn't work before. If I refused she said how can she treat me. I just don't understand. I have endometriosis and adenomyosis and cysts on my overary. I started to suffer with this 15 years ago and it's only getting worse. I can't believe we are just left to suffer it. I wish you all the best and hope you have some better times. Take care. X

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Wow Louise it’s sounds just exactly like what I’m going through. They said I have to go back to the start with treatment options and I refuse to put myself through all that to no avail.

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Oh Tammy I just don't understand. Why are they getting it so wrong. So you too are just left to live with it. Hot water bottles are your best friend. Lol. Best of luck. If I find anything that helps I will let you know. Xx

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I have seen 6 consultants in Newcastle/Gateshead and they all refuse to give me a hysterectomy.

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What's the reason. Mine is because I am classed too high risk. Why will they not do yours?

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They said it effects your bone.

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that is a load of shit. I can't imagine what it's like. I am only at the start of my treatment journey, but I am leaning towards asking for the same thing. I do dread/anticipate a lot of resistance, but as I am 35 and have a child, think they might be more accommodating.

I had this conversation with my partner recently and I do strongly think that it is because as women, we are viewed as the reproduction machines and any women who wants to remove her ability to have children can't possibly be thinking in her right mind. And the patriarchy strikes again. Its a load of bullshit - it is your body, your decision and your right to decide what you want to do. People go on and on about 'reproductive rights' when it comes to contraception and abortion, but when we want to decide what treatment we want for really debilitating physical conditions, suddenly we don't know what's best for us anymore!!?

Bullshit. I hope you are able to find someone to listen. As Catness has said, try some specialist services if you haven't already.

I disagree with what Claire has said (sorry). There is no outright cure for endo, but (and I am not medically trained either) when I was looking into it a hysterectomy is one of the best treatments. When both ovaries are removed the bodies ability to produce the cells is significantly diminished and chances of reoccurrence are much lower.

If you can't afford to go privately, you could try and teaching hospital that has a gyne department that is BGSE. Thats what I am doing. I find teaching hospitals much more accommodating and willing to listen to people

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Cyards I am 40 years old and have a child and they still won’t give me a hysterectomy.

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I have had three laporoscopys and tried every treatment and pain relief there is. They won’t give me a hysterectomy because it effects your bones and has other health risks. To me I think well I’ve got to go through the menopause at some stage so why can’t I choose. Now they have said I need to go back the beginning and start all the birth control pills, coil, pro strap again which none work so I refuse to put myself through that again for it to make me worse. Thank you all for your replies I really appreciate your comments.

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You take hrt and have yearly bone scans and that helps monitor it. I don’t get that argument especially when pro strap and zoladex effect the bones too!!

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Yes exactly that’s my point too. They contradict each other.

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I’m sorry to hear this. I think if you see a private doctor you may find relief. Check out “New York Endometriosis” latest post on Instagram. Not saying you need to see him, but he’s a private doctor and he does excision surgery which most public doctors don’t do. Only downside is the costs but it was worth it for me to have my life back.

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I suggest looking into doctors who are soecialized and skilled in doing excision surgery and consulting with them. You may even find relief without a hysterectomy

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Hi Tammy have you tried prostap injections? They can help with that and may reduce it so your ovaries can be released without removing.

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Yes I have tried prostrap and did help the first time and the mood swings were terrible. The seconded time it didn’t help at all.

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Hey, Tammy. I hope you're doing okay. I'm really sorry to hear about your situation. You must be bummed out. I know, this can be so so frustrating. I hope things get better for you. Just hang in there, okay? You can get through it.

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This sounds really weird. I'm so sorry to hear about this. It makes me so sad. I hope things get better for you. Please don't think about giving up. Good luck to you, honey! You can pull through, I'm sure of it. You're a strong woman.

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hi I was in same position last year I had stage 4 endo, extensive adhesions and adenomyosis and a bicornurate uterus was in absolute agony and I was told by 3 endo specialists a hysterectomy was my only option for some relief and a my life bk I had to keep ovaries as was too young to have them removed, I'm almost 1 year since having hysterectomy and I'm in more pain than before the op, I really hoped I was going to be normal and I wld get a break and be pain free but nope, tonight I'm climbing the walls I'm in so much pain in have to take cocodomol 30/500, morphine oxycodone and iv been put on pregablin recently I feel like a junkie collecting my controlled drugs and sometimes begging for them to hurry with my prescription bcos the pain is unbearable, also I have 3 children and I'm in to much pain to run around and play with them, trust me a hysterectomy seems like a good idea at the time cos at the time it desperate and will take anything but I wldnt wish this on anyone

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I have heard of other women’s stories about having a hysterectomy and still having pain. The thing with me is I’m only in Pain/weak/fatigued when I’m due on or having my period so to me I wondering if I don’t have a cycle then surly I won’t have any symptoms! I’m so sorry it didn’t work out for you. This disease is 💩

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ah that makes sense, I suffered everyday with my pain, hip, back, legs, groin, pelvic ECT and still have it all except the period which I am happy about but wld have also liked the rest to do 1, good luck I hope u get wat u want and that it works for u xxx

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Hi sorry to hear this. How old are you if you don't mind me asking? Iv only just been offered a hysterectomy and I will be 42 when I have it. Sometimes it does depend on age as they won't do it if you are too young. I know how you feel I have dealt with this for 5 years now.

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I’m 40

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Hope you get it sorted. Ask for second opinion.

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