I am terrified to take GnRH before surgery for bladder endo - please help!

Hi there

After being messed around by my previous gynae for ages and ages I finally managed to get a referral to a new team (endo centre). I do trust that these guys know what they are doing. Here is the thing: I have a nodule of endo on my bladder. The bladder is the worst part of all this for me. I have pain and continence issues which make my life less than happy. So, they are keen to do a second lap and remove the endo from the bladder, but they want me to have three months of GnRH injections before they do. But, I would frankly rather take arsenic than the GnRH. The gynae is saying that they may do the operation, and then find that they can't remove the nodule because it is too vascular and then we will have to go through the whole thing again. I kind of feel that it may be worth taking that risk, though, because I just can't get my head around having the injections.

The reasons: well, firstly because I have a stressful situation at work that is so bad that I am close to not coping. It is a horrible boss situation and we are a tiny company. There is no HR or anyone else that I can turn to. I cannot afford to lose my job, so I have to shut up and keep going at the moment. If my hormones go all over the place and I lose my temper with this man, I am going to be out of a job, or he will simply increase the vindictive behaviour. I just can't deal with more!

Secondly, I honestly believe that the GnRH injections do real damage. Emotional and physical damage. I have a friend who had to have them for breast cancer and she has had joint and leg pain since, even long after stopping. There are many, many people who have ongoing tiredness and issues long after stopping. So, I keep trying to work out if it is worth taking the risk that there could be long-term damage.

Also, I just feel in my deepest heart of hearts that this is something I do not want to put in my body. Every cell is screaming at me. I feel like a child that being dragged into the doctors', screaming and crying and begging. Ok, lots of drama and massive over-reaction there, but I don't know how to stop feeling that way. And if I do feel that way, should I be saying to my body to just shut up because doctor knows best? I am not sure if that is the right thing to do. They are pressuring me though. They are saying that 'if you don't do this, the surgery will probably not be successful, and you don't want to have to do it again, do you?' - and so on.

I don't know what to do. I am not sure anyone can help me, but I needed to share. I am running this around and around in my head and driving myself nuts.

28 Replies

  • Hey

    I m sorry you are going through all this. Why don't you get a second opinion from an endo specialist?

    In this way you will know if more doctors agree with this plan and you will make your decision easier.

    Jo x

  • I know how you feel i had mirena forced on me and when that failed and the endo did more damaged i was told i wouldn,t get a hysterectomy even tho i needed one unless i took the gnrh,so i had to.

  • Hi, I have been on GnRH injections for the past 5 mths for my endo. They are the only thing that has worked for me in over 10yrs. I am going to be having a hysterectomy next year but my consultant wanted me to try this first to make sure a hysterectomy would work. I'm on Decapeptyl SR. This was my last option as I have tried everything else to no avail.

  • Hi Sadsmile

    How painful is the endo? How much do you want it to be sorted?

    GnRH affects everybody differently, in the same way that every single drug in the world affects everybody differently, but if GnRH was so terrible not only would it have been banned by now, but the millions of women who rely on it for relief of their endo symptoms would not go back to it time and time again.

    I'm not pretending it's going to be a walk in the park for you, it probably won't be very nice. That being said, I clearly remember my first few courses of Prostap making me feel better than I had in my life.

    Giving Zoladex or Prostap before surgery is common practice when the surgery is straightforward, but when it's more complicated, like yours, it makes absolute sense to eliminate as much risk as possible to make the job easier for the surgeons.

    At the end of the day, nobody can force you to take anything, and it is obvious that you have very real concerns. If I were you, I'd ask to see the consultant, or ever to talk to him/her on the phone, and have him/her explain exactly why they want to use the GnRH, and the risks and benefits.

    But I wonder whether maybe the GnRH situation is being exacerbated by the stress you're under at work. The one sentence in your post that jumped out at me was "I just can't deal with more!" - could you possibly be depressed and over anxious at the moment because of it? Would it be worth talking to your GP and getting help with that so that you can appproach the endo situation with a calmer mind?

    I'm really sorry you've got so much going on at the moment, and I really hope you get it sorted.

    Lots of love, C xxx

  • Thanks so much for the replies! Jo: it is an endo specialist I am seeing.

    Chrissie66: I am definitely depressed and over-anxious. I have chatted to the GP, who was lovely and supportive, but wouldn't express an opinion. I know lots of women take these drugs, and very many don't have nightmare situations, but they all have side-effects. If you have a supportive work situation, or even just support at home, you can get through most things. I am not originally from the UK, so my family support is all on a different continent. My work situation is horrible. I am trying to deal with all this stuff as best as I can, but I just don't trust the doctors to do what is best for me any more. They work according to a fixed protocol and they don't really take the individual into account.

    As an example, there are screeds and screeds of posts on forums all over the net from women who are having huge emotional problems with the Mirena coil, but can't get their doctors to remove it. Many end up going to family planning clinics to get it done because their doctors insist that it cannot be the coil that is causing the problems. Once it is removed, the problems resolve. And still the doctors won't accept that it was the coil causing the problems.

    Littlestar: big hugs, I am so sorry that you are going through this! I don't think that having any treatment forced on you is the right thing. I was also bullied into having the coil fitted and I am not happy with that either. But one fight at a time!

  • What I said is to see a second endo gynae for a second opinion. It makes a huge difference to have a second opinion x

  • Sorry Jo, should have read properly.

  • ginger83: how are you finding the Decapeptyl? Hope you get this all sorted out!

  • I too am having decapetyl sr jabs monthly before more surgery on bladder and bowel. I will also be losing a third of my vaginal canal (had hyserectomy 6 yrs ago) Although i'm low, tired, nausous & dizzy i can safely say it is worth it... But only you can make the decision. I hope all the comments make sense to you, and wish you the best of luck with your surgery. ( i too am worried sick more over the surgery on my bladder and bowel than the injections) xxxx

  • Thanks so much slez. I am already feeling nauseous and miserable and I haven't even had any injections yet. Just the thought of it!

    I am so sorry to hear that your surgery will be so huge. Sending huge hugs.

  • Hi Sadsmile, I just wrote a really detailed reply to you then managed to delete it, very annoying. In summary, I had the 3-month injection of Zoladex back in May as I was scheduled for a major op to remove a big nodule from the pouch of douglas area, which was pressing on my ureter and blocking my kidney. It wasn't fun, I'll be honest, and I was lucky enough that I was not working during this time, but I can imagine that if I had still been in my previous teaching job it would have been very stressful and emotional to be 'under the influence' of Zoladex and try to cope with my job. So I really empathise with your worries.

    However, I think if other organs are involved, such as the bladder in your case, it really is the best option to 'shrink down' the endo as much as possible to avoid risky complications or difficulties with the operation. I had to have open surgery, which had a long recovery period, and I really would not have been happy if they had cut me open, only to say that the removal was too risky and would have to be done another time.

    I know it's a horrible thought to be putting this stuff in your body and I won't lie, I did have hot flushes, difficulty sleeping and bad moods, but just for 3 months. I have just had my first period since the implant, so 6 months later, and I do feel that it has fully worn off now. I would never consider taking it just as a treatment in itself, but as preparation for major surgery I think on balance it is worth it. Although the side effects are unpleasant, I have had zero pain for 6 months, my period this month was pain free and my operation was successful. Could you try some alternative therapies for coping with the stress and emotional side, such as yoga, acupuncture, vitamins etc?

    I hope you manage to sort it out, it's a horrible and unfair situation

  • Thanks so much for your reply blueboo. The thing is, I cannot afford to lose my job at this stage and with the current stressful situation, adding mood altering drugs on top of everything else - I just don't see how I will manage to not hit someone. Or at least shout at someone. Of course health is totally important, but so is paying the rent and eating. I just don't see how I can get through this without a good support system in place and a better situation at work. To be honest, the bladder symptoms are driving me mad, but the pain is not currently at such a bad level that I can't live with it. I am miserable with the bladder stuff, but the consultant is basically saying that the bladder symptoms are not down to the endo anyway. Not sure what it is then!

  • Hi there

    this obviosly is a real dilema for you.All i can say is that i was suffereing so badly with the symptoms of endo that i was willing to try anything .i have two lots of zoladex and both times they have transformed my life .yes there were side affects but compared to endo they were tolerable.it sounds like you need to talk this option through again but please remember everyone reacts differently to all sorts of treatments and believe me if i had had a really bad experience wth the GnRH i would not have gone back for a second course.I hope you have the imfo you need to make your mind up on this ultimately its your body and its your descion but i feel that living with endo is really hard and if your given an opportunity to possibly make things a little better even for a while then i would snap it up. All the very best to you.

  • Every now an then I think: well maybe it won't be so bad for me, I should give it a try - and then I absolutely get a panic attack about it. It is as though my whole body is screaming. I feel raw. And I know nobody is going to listen to me until I at least try it. But I can't get past this.

  • Sadsmile... Feel free to shout if you just want to vent. I'm always on facebook if u want to connect? We all have a pretty good idea of what your going through. And often just venting at someone is a huge relief. I too have suffered with depression so know how you feel. Sending u a cyber hug. Xx

  • Thank you so much. I do feel like I want to shout. And cry. And cry some more. Thank you so much for the hug.

  • Your welcome hunny. X

  • Oh gosh, I am so sorry they did this to you. I can't believe they would do such a thing...ok, I can. Just shocked. And thanks so much for telling me about this. This is exactly what I am terrified of. Once it is in, it is in. If I then discover that the emotional side effects are too much to deal with, I can't stop taking it. Really big hugs to you!

  • Hey, I totally feel for you. I had one months worth of prostap after feeling exactly the same way you do about the sitaution, and nearly lost the plot, however it later turned out that my GP took it upon himself to decide I probably didn't need any HRT and that's why it was so awful. So now, I have a gynae appt tomorrow (stupidly long and crappy story) and i think they're probably gonna pretty much force the full 3 months of it upon me, I am breastfeeding my daughter at the minute and really don't wanna give that up for a repeat performance, however I can't carry on the way I am either. Nightmare situation. Just make sure you know where you're at in terms of the add-back HRT stuff before you go for it, it stopped my pain but opened up a whole new can of worms in terms of side effects, and I was gutted that they should have been controlled, but the side effects went away, pain came back. Vicious circle :( be strong xxx

  • Thanks squid. I have to admit that I am not in so much pain that I would do anything at this stage. So another strike against having it. I wouldn't even consider it if it wasn't for the fact that they are saying that the surgery may not be successful without it. But even then, I just don't think the risk is worth the 'maybe' it will help the suregery, but 'maybe' it won't.

  • You know what, I just read the post above my original one, and that sums it up really, I do not want that in my body ever again. Sending huge hugs ladies xxx

  • And hugs to you too!

  • I am also considering taking this and I'm terrified of it for similar reasons to you, but my GP told me that there is a nasal spray you can take that has the same effect only it is not as permanent. It gets out of your system within 48 hours, so if it really upsets you and you hate it you can just stop taking it and you will only have to put up with it for two days. She said this option is not advertised by consultants but that it does exist. I'm not sure if this is an option for you, but I would definitely talk to your GP or consultant about it, in case maybe they can give you that instead? my GP actually has endo and has used it herself and she swore by it, but she understood my concerns about it affecting me mentally. I have not decided yet if I will try it but this sounds like a much better option for you so you could try it without the threat of it being long lasting x

  • That is an interesting option. I am seeing them tomorrow and I'll ask, but at the moment my thought is that I am going to say no to this treatment option. But this sounds a lot less scary than the injection!

  • I agree, I might try it myself, afterall it can't really do any harm if it's only 48 hours, but I'm like you I absolutely cannot stand the thought of hormonal medication. My mental state is so fragile I just know it'd send me over the edge, so I completely understand.

  • I really do understand how you feel. I am 22 and have had, because of no other choice, a total of 16 months of GnRH agonist. You are right - it can cause irreversible, long term damage. However, it can also shrink endo down to a state where it doesn't cause pain and can be treated easily.

    Everything carries a risk, including surgery, something which I'm sure you don't want to go through more tha once. Nobody believes more fiercely than me that GnRH is NOT the solution and should not be considered the answer to our prayers, but if I was told that 3 more months of it would give me the best chance of getting my life back, I would definitely take it, but I would I insist on HRT to minimise the risks.

    Nobody can make this decision for you, but you have the chance here for a successful life changing surgery. I'd do whatever it takes to make it work first time, for your own quality of life.

  • A quick update. I saw the gynae yesterday and I have decided not to go for the surgery immediately. They are going to remove the polyp without anaesthesia and remove the Mirena coil at the same time. I will then be taking no hormones at all. I am scared that the endo will come back as fast as it did the first time (it was barely a year after stopping the pill that I needed surgery). But, I just feel as though I need to know what is actually happening with my body at the moment. I am not having periods, so would like to see what is going on with that, and I think I may be having a lot of side-effects with the Mirena, but they are difficult to attribute unless you get the thing removed, see what happens, and then put it back if it turns out it wasn't what was causing the problems.

    Don't know if my thinking is sound. It just seems that doing less at the moment is the right thing. But so, so worried at the same time.

    Thanks to you all for the advice and input!

  • Thanks! I think a new job is going to be the only rememdy - but that means the whole stress of finding a new job. Oh dear. Thanks for the hugs and hugs back to you.

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