hormone injection treatment for endometriosis?

Posted , 6 users are following.

Hi

I recently had a laproscopy to remove an ovarian cyst which was caused by endometriosis. When inside they discovered more endometriosis which was taken away then and there.

I have never had problems with my periods - not too much pain and regular ever since I started. But I've been admitted to a & e twice with severe abdominal pelvic pain which is how the cyst eventually got diagnosed.

Now I have been told to have the hormone injections which temporarily induce the menopause with all the side effects that entails for three months followed by continuous use of the pill. Has anyone had this treatment? Would you recommend it? I really don't want the side effects of the menopause as I'm already on medication for depression. Also I am 40 and I haven't had children although I'd like to so I want to preserve my fertility. I know time is running out and the doctor said my age is more of a factor than the endometriosis. Is the hormone treatment just to relieve pain? Because I think I was only in pain from the cyst so as that's gone should I wait to see the operation has worked in that respect before the hormone treatment? Or will the injections prevent the possibility of the endometriosis coming back?

I don't want to start this quite invasive treatment without all the options as it's kind of been presented to me as a fact and I'd like to know what my options are.

Any advice would be gratefully received!

Thanks x

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  • Posted

    Hi I had a laparoscopy on the 5th December and the consultant told me that there was severe and extensive endometriosis and that I had no discernible ovaries because they had been elongated by adhesion and were covered in cysts etc. basically I was one of the worst he had seen. The reason it was found was because I suffered intramenstral bleeding and have been trying to get pregnant for about two years. I am 40 now and so decided to make sure everything was ok. Good job I did smile anyway the consultant recommended prostrap3 for one injection to 'dry everything up' as he couldn't remove all of it. Then to start trying in march. I was worried about the side effects I.e. Hair loss, weight gain, depression, fat ankles etc. but reasoned that it's probably not going to have time to affect me over the course of one injection. Today is when I should start my period and I am having a light one which hopefully won't last and again I'm reasoning that it will probably take a few injections to stop periods completely. If you want babies I would follow the docs advice and go on the pill the endometriosis  will not have a chance to come back if you have hormonal treatment to stop the cycle which allows it to grow. Being on the pill will allow you the opportunity to stop when you want to get pregnant and increase your chances as there should be limited endo growth and therefore the removal that has been done won't be in vain. I want to go on depo provera after either having baby or trying to as this will stop periods and hormones, fingers crossed I'll feel better. The injection has made me feel rubbish but it's only for a month so I took it. Good luck and hopefully you've been able to make an inform choice smile x
    • Posted

      Thanks so much for your reply. They recommended that I have injections for 3 months then go on the pill. I don't have a meeting witht the doctor until 8th Jan so trying to as much research as possible before then. I'm assuming it's been recommended so the endometriosis doesn't have a chance to grow back but lots of online information says it doesn't grow back for a few years anyway...

      Good luck with all your treatment and good luck when you start trying for a baby. All the best xx

    • Posted

      Perhaps you should ask your doctor if just going on the pill would be enough? If you already suffer from depression this injection can make it worse, according to the side effects, and if he has taken away all of the adhesions then regulating your hormones with the pill may be enough? I dont know as not a doctor and only got diagnosed two weeks ago. If he wants you to have three injections there must be more to it? I know it's all so confusing and depends hugely on the consultant you get. My side effects are currently, loss of appetite, leg pains, abdominal pains, headaches, afternoon fevers, and some bleeding but I can't exactly say if these are all from the injection alone. Can you ask for a second opinion from a gynocologist? I don't want to tell you it's ok go on it, as for me it fits especially as I only have one injection. What I can say is that the op definately improved things and it's wait and see on the injection, but it should be wearing off by the 5-6th jan so can give you an update then before your appointment. Take care don't worry and have a good Xmas x
    • Posted

      Thank you so much - your side effects don't sound too pleasant so I hope they fade soon. I guess they should as it's only one injection. I was wondering too if the pill on it's own would be enough. Basically I have so many questions! They told me this treatment would be needed only 40 mins or so after I came round from the operation so I was in no fit state to ask questions then. I also suffer with migraines so the side effects of headaches but especially depression are the most worrying so I need to make it clear what my existing medical conditions are. I hope you have a great Christmas and for the next two weeks I will try not to worry! xx
  • Posted

    Hi Nicjh yes I has the same problem, it's very difficult to ask the right questions when they deliver a lot of information to you when you're in a groggy state! I also had to take the injection before I left the hospital. I get the impression that the consultant is trying to do the best for me in terms of conceiving and perhaps this is why I am only having one injection as the main reason for the op was to check my fertility. I did ask if the injection was likely to kickstart actual menopause and he said no, which did set my mind at ease a bit. Go to your appointment with a list of questions set out on paper and get her/him to draw you a diagram so you know exactly what they saw. Hopefully that might help you be clearer on why it's recommended for three months. And also if you have the first injection and get really bad side affects you can refuse the rest and go on the pill, one injection will have some effect otherwise I would reckon i'd be on more. Also my side effects are mainly headaches and appetite loss the rest are minor twinges with the pain and bleeding around when my period should be but I've seen in other forums that quite a lot of women get this bleeding. Will be back in touch after new year to let you know how a month goes on the injection xxx
    • Posted

      Thank you so much - it would be great to hear how you get on with it xx
  • Posted

    Hi. I have had a very similar experience. I've not really suffered with period problems but suddenly got sharp pains especially when bending down quickly and had started getting a bit of discharge. Scan showed a large cyst so had laparoscopy 3 weeks ago to remove. Turns out I was riddled in endo and it had fused organs together hence the pain when I stretched my insides on bending down. I wasn't given a choice and was given the first of 3 zoladex shots in recovery room to bring on menopause and stop the hormones in readiness for total hysterectomy. I have really suffered from side effects from week 2 of first injection. vomiting from severe headaches and the worst is the neck pain. I've had mild night sweats but they are OK in comparison. I have taken more pain killers in last few weeks than all the years of periods I'm 39. Seriously consider having your hormones stopped as I'm sure that because of amount of endo found drs have assumed my endo pain was really bad-it wasnt. I'm now not sure what to do as 2nd jab due and  even whether to have op as I feel worse now than before. I have had date through without any further consultation with Dr which I've now insisted on. Not saying you are going to react in same way but just be mindful you could. Good luck
    • Posted

      Wow it really sounds like you're going through it. I'm surprised they started treatment straight away as when you come round you're in no condition to make an informed decision.Like you my first appointment is with a nurse to start treatment rather than have any consultaion with a doctor first which I'm going to insist on. Maybe you could consult a doctor before your second jab? Thanks for the advice it's good to be warned. Good luck with everything and I hope your side effects go quickly x
    • Posted

      Thanks. I have asked for appointment with consultant. My own GP has refused to do next injection because of side effects so I may end up not having it anyway because I'm actually due jab Xmas day and can't get hospital appointment until end of January. I'm hoping it doesn't mess anything up but will also give me opportunity to see if symptoms get better without it. I wish you well and really hope it all works out. PS if you get offered local anaesthetic before jab take it. They implant a grain of rice size hormone and it can hurt x
    • Posted

      Thanks for the heads up - I had no idea they implanted something. Hopefully your GP is on the case. I'm sure it won't mess things up because some people only have one injection anyway. All the best x
    • Posted

      Nor did I til I looked it up afterwards but Ihad zoladex and not sure if the same thing?? 
    • Posted

      From what I can gather from the limited research I've done there are various different hormones that are used for the treatment and various ways of administering them. I haven't been told which one they want to give me but I guess I'll find out on 8th January when I have my next hospital appointment x
    • Posted

      Hi the prostap3 was a powder mixed with a liquid and then injected into the bum muscle for slow release, it hurt for about a day but otherwise ok x
    • Posted

      So I saw the head consultant yesterday who when I asked about my best chances of fertility replied "it was 5 years ago!" Then he told me I needed 6 months of zoladex injections not 3 followed by another laparoscopy. He also said the side effects would definitely make my depression and migraines worse. If I don't have this treatment the endo and cyst etc will grow back quickly as they couldn't get rid of all of it during the first op like I thought they had. I feel very stuck. I don't want any of this but I guess it's my best chance of controlling the endo? Wish I'd seen a female surgeon though as he was pretty flippant about everything.
  • Posted

    That's so annoying when they are flippant. My consultant said women can get pregnant until about 50yrs old or the menopause as long as everything is working. I've been doing some reading and there is a lot of evidence to support diet change as a way to reduce, manage and reverse endo. Have look at 'the endometriosis natural treatment program' Ann Valerie Worwood, Julia Stonehouse. It's on Amazon. Lots of info on the condition and there is another book which has lots of recipes that are really easy. Perhaps this is better than hormones that will make your migraines and depression worse. My symptoms have turned into muscle aches but the headaches have gone away. 
    • Posted

      I'm sorry you've got muscle aches but glad the headaches have gone. Thanks for the advice re diet. I've read another book on it and it seems to make sense. I'll definitely check out the one you recommend. Thanks for your reply and good luck x

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