Consultant wants me to repeatedly go on/off prostap?

Hi, I'm new here but was diagnosed with endometriosis two years ago, when I was 22, after suffering for about 8 years. There's a tonne of stuff I just want to get off my chest because I feel like none of my friends/family/fiance truly understand some of the things, and I need to know that other people feel the same.

A quick background - I always suffered from the typical endo symptoms and was fobbed off with everything, including one doctor telling me "sex was supposed to be painful for some people and you just have to live with it" and a swab that was so painful I had to vom afterwards, so eventually I got covered by my dad's health insurance and went private. Within one month I'd had an ultrasound, laparoscopy where they found significant endometriosis (that had fused my ovaries and kidney tubes together) and lasered as much as they could out without damaging my kidneys. Then I was on prostap for 6months followed by three packs of microgynon back-to-back with one week off to keep it under control. This worked well for the last year and a bit, then symptoms all started coming back, the most significant being my weeks off of the pill were horrendously painful and I haven't had intercourse for 6months. Now I've graduated I'm no longer covered by my dad's insurance so had to go through the NHS (which I of course have nothing against, it's a great service).

Anyway, so my gynae appointment was today and went something like this-

Talked about symptoms etc etc and the doctor went to speak to his consultant, who said I needed an internal examination. I was completely freaking out, crying and blacking out but at the same time insisting we go through with it if it was absolutely necessary, because the previous simple swabs I had taken had been so utterly painful, and this person wanted to move stuff around and get right up in there and try and feel if there were any cysts or anything. Anyway, in the end they just couldn't get anywhere with it and I felt so useless because when I try to talk to people about this and how painful this sort of thing is, they say "oh but it's part of life everybody has to be examined/have a swab or smear at some point it's not pleasant but you just do it", well I've not been able to have anything inside me for the last 6months for pleasurable purposes, let alone gloving up and whapping a speculum in there and it just crushes me pyschologically it's so invasive. Have other people had the same experience with this being so painful? I feel like a complete failure and that nobody understands and I could tell all the nurses just thought I was a precious drama queen when the reality couldn't have been any different, I had told them to do as much of the examination as they could and I would just cry my way through it if I had to but the doctor refused in the end because it was getting so painful/distressing for everyone in the room.

ANYWAY that's a slight digression but also was really traumatic and I just wanted to get it out. The consultant said that I should go back on prostap for 6months (so had my first injection today) then onto the contraceptive injection instead of the pill and see if that controls it. I asked if that was a long-term solution as surely if the symptoms then come back again just going back to prostap can't be sustainable, especially with osteoperosis risks etc? Anyway, her response was that endo gets better with pregnancy so we'll see where we are when my fiance and I want to start trying for a family.

Now, I'm all for having kids and would adore a family but I have discussed with my fiance that the thought of being pregnant/having a child of my own (if that is even possible - what with endo related fertility issues being a possibility, plus the fact with my ovaries being fused to my kidney tubes my consultant said they wouldn't really know if my ovaries were capable of producing a good enough quality of egg until I were to decide to try for a baby) literally repulses me. I have been through SO much trauma regarding that area of my body and I have absolutely no interest in having anything else to do with it. I know people say it's being silly/I will get over it "when I am ready" blah blah but I am absolutely 100% settled and happy in myself that I really really do NOT want my own kids, I would be perfectly happy to adopt a child one day when I am ready, but I am never ever putting myself through a pregnancy and of that I am 100% certain, and was certain of this before I was even diagnosed/treated for endo in the first place. If they had turned around and said "it's all grown back, we'll do a hysterectomy", whilst it's a daunting and serious procedure, I would have been 100% fine with that in terms of its impact on my ability to have children of my own. But the consultant just smiled and said "oh you will change your mind, we'll see where we are". Sorry but I don't think that is an acceptable response? I don't see why they are putting me on a roundabout 'treatment' that sort of depends on whether I want kids at the end of it and assuming that is something that I will do simply because I have a vagina? Anyway, anybody with experience of being on prostap multiple times and knows whether it worked better/symptoms are less likely to come back after the second time, responses would be very much appreciated. I had my first injection on it today and I don't know if it's just because I'm exasperated/drained/have cried so much today, but I already feel less feminine and more disgusting and utterly fed up. I'm sure it won't have had an effect that quickly and it's just a psychological thing, but I really don't want to have to go through this same roundabout 3/4 times :/

Anyway, thanks in advance for any responses and apologies for the length of this post. xx

23 Replies

  • Hi sorry to hear of your struggle. I understand completely what you say about smears. I dread them- they make me want to cry and cause so much pain that some doctors just don't get and say it's normal or tell you to relax. The last nurse who I saw for a routine smear I explained Prior to it and she was super nice and made some suggestions as regards to painkillers. That doesn't help if you're taken by surprise as for endo sufferers you really have to psychologically prepare yourself.

    Haven't had injection but have have had coil inserted three months ago and is helping somewhat/ have you explored this

  • What does the coil do? I don't know if I could handle the whole insertion, makes me cringe so much. I'm sure half the reason I don't have sex anymore is partly because of how painful it is but also how much trauma I've had down there I simply can't see it as a pleasurable place anymore!!!

  • The mirena coil is a T shaped gadget inserted in to the uterus. it is a contraceptive on the one hand, but also it releases slowly a very low dose of progesterone, bout 20% of the strength of birth control pills, and this is constant and straight at the uterus, where over few months it causes the lining of the womb to get thinner and thinner to the point there is very little ir any of it growing each month, so it stops you having period because there is no lining there to shed away each month, it also causes the cervix to increase production of cervical mucus which plugs the cervix preventing sperm getting in to the uterus and providing cushion of protection to the cervix from irritation caused by period bleeds in the early months which can aggravate cervical erosion pains.

    The mirena lasts up to 5 years doing all these things and as a bonus, it also stops ovulation in some women, so no periods, no period pains, no PMT, no cramps, once it gets to work properly it is very liberating and saves a fortune in tampons, towels, and gives you back so much free time to get on with life.

    The down side is insertion -and you should insist on hving it put in under anesthetic, either during a laparoscopy - if you should have one, or just for the purposes of having the mirena inserted.

    Again this is something you are entitled to ask for, though of course they would rather you went ahead and had it put in without any help, so demand your rights to anaesthetic when you know you will need it.

    I'm afraid that sex pain is not easily or permanently cured by surgery, in most cases any relief is temporary. adhesions can be cut back in surgery, but they are scar tissue and will always grow again. Every time they get torn, more will grow. You cannot stop them they are your own body's way of protecting itself from harm and hurt.

    There are hundreds of previous discussions on this forum on sex pain - it gets chatted about just about every day or two, so use the search box on the green bar at the top of the page and type in sex pain. Have a read through some of the previous discussions for how ladies with endo can still enjoy intimacy without causing pain by having vaginal penetration. It is major problem with endo, but there are options and ideas for ways to adjust what you do to try and find ways to have fun and not hurt.

  • Thank you for this!! It's amazing to come to a place with so much combined knowledge from everyone (although you in particular seem to really know your stuff! thank you so much for sharing) when all I've had to go off before is mixed opinions and mixed messages from all different doctors and consultants. It's overwhelming how much there is to take into account compared to how much you are actually told.

  • Hi ,

    Speaking from personal experience , the Mirena coil is generally not reccomended in women who have not gone through childbirth . The insertion is much more painful and I would seriously consider having it inserted under anaesthetic as previously advised . If you decide to have it fitted at all !! I was also told ) 20 years ago ) that my symptoms would get better after childbirth . Eventually after many years of getting no where I had enough and requested to see another consultant . Don't be fobbed off , it's a serious condition and you need the right consultant to get the right treatment for you !! X

  • The internal scan is really a very different procedure from having smear or swab taken.

    The swabs require the medic to insert a speculum and open thenup inside so they can visually see the cervix.

    And that is exceptionlly painful for so many endo ladies, myself included...and you are entitled to have anaesthetic to help you get through that. Just incase no one told you that.

    The NHS do not promote this fact, because they are rewarded a monetary bonus for each patient that they mnge to do these processes on that doesNOT require anesthetic, but as a patient with endo you are entitled to it, so ask and demand you have anaesthetics if you are one of those who certainly does need it.

    Now as regards the trans-vaginal ultrasound, quite a different thing altogether.

    There are fro my own experience two types of transponder probe.

    One is definitely dildo shaped, and quite bulky device, the other is a more like drinking straw with small pingpong ball on the end of it.

    In each case they are covered in a sheath (condom thing) with loads and loads of lubricant.

    There is no use of the wretched torture device ..the speculum.

    The probe is simply inserted up the vagina and moved slightly inside. it doesn't expand or stretch the vagina, it doesn't open up or stretch the cervix.

    I have absolutely no problems having the trans vaginal scans pain wise, but I cannot at all complete having even the smallest speculum opened up inside it is just off the pain scale of agony.

    I know we are all different in terms of what our tollerance of pain is down below for these things.

    If your experience with the TVUS scn useda dildo shaped gadget, then I would definitely make enquires

    at that hospital and others nearby to see if any of them are using the newer technology skinny straw shaped ones. That sort as even easier to cope with.

    Also know your rights, you are entitled to painrelief to get you through the process.

    My last smear, I barely managed to get through, but I did...wth pain killers before the proceedure and entonox (gas and air) throughout. It took enough of the sting out of it that the job got done, and i had a few days on pain killers after that.

    With the trans vaginal scans I have never needed pain killers before or after those, they're a doddle in comparison.

    The reason is there is a natural tube to the vagina and the probes do not stretch that much at all.

    The speculum on the other hand when it is opened up inside relies on the vagina beingvery stretchy, nd with endo causing adhesions inside and outside of it and the cervix, it acts like a superglue corset on the inside and the outside of the tube. Stretch that and the adhesions will tear at their weakest point ripping from your body which hurt like hell and ismuch the same as ripping off a really strong glue plaster from the skin taking the skin with it. It can be exceptionally painful for so many of us, you are definitely not alone in this regard. It is very common with endo to cause this.

    There are a few ladies who have reported problems having the transvginal scans, but most of us even if we cannot bear to have the speculums for the other types of gynea exams, can tolerate the ultrasounds pretty well, it isn't anywhere near the discomfort levels because the process is really quite different.

    I would urge you to try the TVUS again if you get the chance... with a muscle relaxant pain killer before hand - something like voltarol is fine. And remember always insist on anaesthetics for any checks that use a speculum. it is your right to have that help rather than be butchered and bullied in to having the deed done with no help at all. It is worse than a rape to brutalised like that. I have had some horrendous failed attempts at smears in the past by some absolute hitlers in the nursing profession.

    You have to be confident and demand your rights. And tell them in advance that when you say stop, that means STOP RIGHT NOW, release the speculum immediately and pull it out. Take someone with you (mum, aunty, BF etc) or you can askfor a chaperone from the nursing staff.

    You can even go so far as having a general anaesthetic if needs must. Remember you are the one who has to cope with the pain during AND afterwards for several days. Not the nurses or Docs. So be sure to insist on what is best for you. I wish you so much better luck next time.

    I had no idea of my rights, and for years kept having failed smear tests every few months, taking a few days to get over the pain, but I'd go back thinking this time i will relax more etc.. i thought it was all in my head, i had no idea it was endo and adhesions, kept blaming myself and apologising for wasting their time.

    But I know now it is very real, certainly not in my head and a definite physical cause to my pain down there which needs to be taken in to consideration, and the only person who can insist on having anaesthetic is ME. It won't be offered, volunteered or encouraged, because they get paid not to promote it, but one doc told me it was my right to insist and it certainly is.

    Have a read of this and you can join Debbie's Campaign by letting her know of your experience. She is collecting evidence of women being treated badly when requiring pain relief to get through these things.

  • Oh my goodness. I had LITERALLY no idea that I was entitled to all of this. You have no idea how much I have just cried with relief reading this. I have had to have numerous swabs taken throughout the whole diagnostic process (doctors saying it might be an STD despite me not having had sex in months and months, etc) and they have inevitably got frustrated with me and I thought I just had to scream through it ("you HAVE to relax or it will just get worse and worse" - as if I wasn't already trying my absolute hardest?!), which is what I would have tried to do today except the doctor wouldn't let me on this occasion, he was just so so nice. I think that my experiences re. speculum have been so bad that I haven't been able to cope with anything else. When I was originally diagnosed, like I said it was at a private hospital and as it was all being paid for by insurance, the consultant just did the transvaginal scan whilst I was under general anaesthetic before the laparoscopy. But unrelated to endo, I got my letter from my GP a couple of weeks ago inviting me to start going for smear tests and I utterly freaked out, I had no idea how I was going to be able to go. My fiance said I was being stupid but I genuinely said I would rather take the risk of having something life-threatening in the future than go for smear tests, and I 1000% meant it.

    Thank you so much for bringing this to my attention. So if I insist on anaesthetic does it have to be done at the hospital/referral put through? Would I need to book a regular GP appointment to talk about this? Or can they give me gas and air in the GP surgery? How does it work? I think I'll leave it a good while to get over today before I call them up about that anyway lol...I can't believe this is something that we are entitled to but they don't tell us. Surely it costs them MORE for us to take up so much of their time? I was in my hospital appointment for 2.5hrs today because I was so distressed and they kept having to go and get the consultant.

  • See for me it's backwards. I can handle the gyno exams (they have to use the smallest speculum though). It's the transvaginal wand that gets me. Being up on that stupid pillow with the wand inside me pushing on all the endo spots. ouch ouch ouch. And of course they CAN'T see what is causing me the pain from the machine either, so they look at me like I am nuts. :P

  • Oh balls. This made me realise that when they said they want me to go for an ultrasound they probably mean TVS? I had an ultrasound before when I was originally diagnosed but they only used the thing on my tummy. The consultant DEFINITELY said ultrasound and didn't mention TVS at all though so if I turn up and it's actually that I will be causing a shitstorm lol...I just really REALLY aggressively protective of my body at the would assume from this that they just want to do a regular ultrasound on my tummy, right?

  • More likely to be a TVS. Depends what they want you to have the scan for. For example, a TVS offers a better look of your ovaries. In reality, the only thing that ultrasounds are useful for re endo are picking up endometriomas. General endo does not really show up. I've sometimes ended up having both at the same appointment as my endo affected my kidneys - so an external scan can sometimes give an idea if the kidney is dilated etc. Phone them up and ask for clarification.

  • Ah okay...well if I turn up at it's a TVS I won't be letting them do it, simple as! They have no right to not inform me of something that people with endo can quite rightly find rather traumatic. Last time I was due one of those it was so painful they gave up and did it whilst I was out and having my lap. But I'm not allowing myself to go through the psychological mess it puts me in from the outset, this time. They can't expect me to whap my legs open on a whim and be totally fine with that, and if they do then that is horrendously oppressive and I won't be having any of it!

  • Ohhhh no. I thought I was going to get a regular ultrasound (as I never heard of a transvaginal one). Boy was I ever shocked. Nope, they do BOTH kinds regardless.

  • Well they won't be on me! I'll be putting them firmly in their place if they think they have right to do that without properly informing me.

  • Yes it is a referral to the hospital - because they have the equipment to do this. 1st book to see your GP, explain that you are needing a referral to the hosp to have an anaesthetic because of the pain.

    The GP is rewarded for every woman that they get to take part in the smear program.

    It does add time to the whole process, because it is not a high priority so you will end up on the non-emergency waiting lists, but quite honestly it is just not going to happen without help, so it is worth waiting for.

    You may have to jump through hoops to get what you are entitled too, but don't give up trying, and don't be fobbed off either.

    It is not like any of us are refusing to have these checks on a whim, it really is excutiatingly painful to go through and I honestly do not think there is a man alive that would tolerate such pain for a swab. And like you I had got to the point of saying I'd rather risk cervical cancer than the pain inflicted by a speculum, and I meant it.

    I am on recall now for every 6month smears, but it takes about a further 6 months of waiting for the hospital which really puts things at a yearly turn around time for me. Crazy yes, but that's the NHS.

    It does cost the NHS more, but the NHS pay the GPs for each appointment we make and keep. So the GP is not out of pocket for your visits on the contrary, they are handsomely rewarded. The whole system is unbelievable inept.

  • Gosh. And here was me thinking I was utterly wasting their time every time they'd tried to do a swab before. I will be making an appointment regarding my smear test and insisting on a referral. I'm only due to have my first one (I think I mentioned in previous post, it was all swabs that I had done before not an actual smear as they were testing for STDs and stuff when they were originally trying to find out what was wrong with me) and all being well I'll only need on every 3yrs so I don't mind waiting lol..I understand why they don't want to shout about the anaesthetic option but can't get my head around the amount of time I have spend crying and vomiting and passing out on that table nobody ever even mentioned it to me?! Surely if someone is in that much distress it's the only way to actually get what you need from the situation. I feel incredibly manipulated and angry that this has never been mentioned.

  • Hi

    Just to reinforce the fact that you are not alone. I've put off my smear for the past 6 months - which is of course, I know, irresponsible of me on one level but is hardly suprising given the amount of pain during and after the procedure causes. Why the medical professional can't grasp that this is a reality for some people, particularly when you've had or still have a lot of recto-vaginal endo and surgery, is beyond me. I was lucky last time round as my smear was due around the time of a planned operation - so I convinced them to do it whilst I was out. It's interesting to read the above info - I may have to bite the bullet and demand an anaesthetic. No doubt a fight will be put up though.

    Regarding transvaginal scans - I've had mixed experiences. Some have been tolerable. A couple in particular have been pretty painful - particularly one - where the guy involved actually said ' never let anyone do this to you again' and then promptly organised some morphine for me! I didn't cry out but there were tears running down my face with the pain and I vomited. I think it very much depends what is going on 'in there' at the time of the procedure. For example, at the time there was a lot of recto-vaginal endo, cervical endo etc.

    Anyway, don't feel odd or alone. A nurse did look at me once as if I was a neurotic freak. I asked her if she had a diagnosis of Stage 4 endo or if her rectum had ever been superglued to her vagina. The 'look' stopped - but it is difficult x

  • With regards to the mirena you are entitled to have it fitted under local or general. I find both transfer vaginal scans and smears awful but I did managed to have mirena fitted under local. I'm not going to pretend it wasn't painful but it's worth considering.

  • Thanks so much for your replies everyone.

    Does anyone know about the sitch with repeatedly going on/off prostap, though? I know the pain of the examinations etc is something pretty much everyone here relates to!!! But the prostap is a pretty pressing issue for me right now as well - has anybody been on it multiple times?

  • I've had two 6 month courses of zoladex (same type of drug) 3 years apart. First course helped though worsened things for a couple of months. Second course did not help much- but still worsened things for a couple of months. I say it didn't help much - in that I was still in daily pain for which heavy meds were needed and had other severe symptoms but I guess I did not of course have periods so that was at least one pain 'peak' time out of the way - though there were enough others of equal magnitude! I suppose in reality things could have been even worse if not on the zoladex ... GULP.

    Some women do take significantly longer courses of zoladex with great relief.

  • Sorry, just realized you were talking about prostap... not the same as zoladex. Bit of mind fog going on here today. Hopefully someone else will be able to comment on prostap for you. I've never used it.

  • HI, I'm on my 2nd course of Prostap - the first was over a year ago before I had my lap and endo diagnosis. I have stage 4 endo and reckon Ive had it about 30 years now. I've no kids and Ive never wanted them - you know if you don't, no matter how old you are - don't let anyone tell you any different! After my diagnosis, I was given 2 options - go back on Prostap for a year at a time, with maybe 6 months off inbetween, until I reach natural menopause (which could be up to 10 years), or have a total hysterectomy (but because of probable complications due to evrything being stuck together, this want pushed). I went with the Prostap - I've had 2 3-monthly jabs now. This 2nd time, I was told I had to take HRT too, to prevent osteoporosis, plus I had depression, insomnia and hot flushes the 1st time around. The HRT has helped with this, but I'm still fatigued and bloated. The pain is still under control though. However, Ive done a LOT of reading up on endo since my diagnosis and I now awaiting referral to an Endo Centre, as I want to see someone who will hopefully be able to offer me other treatments. I really dont want to stay on Prostap indefinitely (Impatient can give you lots of info on what a nasty drug Prostap really is!). You also have the right to be referred to the Endo Centre of your choice - you'll find the website link on the forum. One thing Ive learnt from having Endo is you have to be persistent and fairly forceful, but you eventually get taken seriously!

  • I won't be letting them put me on prostap indefinitely! I get every side effect going and I hate it. If they are able to do it (my ovaries are glued to my kidney tubes so not sure how doable that would be) I would one billion per cent have a hysterectomy without batting an eyelid. I'm sure the only reason that hasn't even been suggested as a "further down the line" option is because my consultant has dreamed up a "marriage -> house -> babies" ideal in he head for me.

  • I was told that I could only have 6 month total of zoladex (prostap is exactly the same just a MUCH nicer procedure) in my lifetime :( had it now so lap number 10 is now booked in the hope they can clear the way for a hysterectomy but got told its unlikely.

    Endo really does suck xxx

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