Confused and frustrated to the point of tears!

Why do the doctors aways seem to mess you about?? I had a lap with endometrial ablation 30/7 and have been in constant pain ever since to the pint that mid August I was readmitted for four days and pumped full if painkillers while they decided the cause...something that I'm still trying to discover myself!! I was referred back to gynae by my gp who said we needed answers she couldn't provide, and saw a new consultant who took great time listening to my situation, at that appointment she said she was willing to book me in there and then for total hysterectomy (after she'd discussed gnr's whîch I said I wasn't keen on the idea of because I've yet to hear one person have a positive feedback of gnr's) but wanted me to have MRI and see gastrointestinal surgeons to rule out any other issues so she arranged those appointments and I was booked to return to her clinic in December when she'd schedule the surgery.

Anyway my gp phoned me to arrange an appointment which I duly attended today and was told that I'm having gnr's and need to book an appointment with consultant to begin them in order to assess if hysterectomy is my best option and its noted that my pain is caused by constipation....well sorry but the constipation comes after the pain and the meds needed to control that.....I feel like I'm being pushed into a corner and my choices are being made for me.!!!

I had adjusted to the thought of surgery and was looking at it like a light at the end of a very long tunnel!! But feel so frustrated that my consultant told me one thing to my face then something so different to the gp!!

I honestly don't know what to do for the best and am being reduced to tears by it all!!!

Also I was told in my return to gynae my left Fallopian tube is extensively blocked and I appear to have adenonyosis :(

15 Replies

  • So sorry to hear you're going through such a tough time :o( My situation seems very different from yours so unfortunately can't share my experiences of treatment etc. The title of your post caught my eye as I too, particularly over the last couple of days after having a horrific experience having a mirena coil fitted, have been feeling extremely confused and frustrated to the point I can't sleep through worry and discomfort, so can understand you feeling as you do at the moment.

    Have you considered writing to your specialist reminding her of the conversation you had regarding GNRs and cc'ing your GP, so both are aware of your feelings towards the treatment and asking the reason for the discrepency between your version of events during the appt and the version sent to your GP? Any responses you get could then be logged and may prevent you feeling confused about the 'plan' of treatment as you'll be able to refer back. Just a thought as it will enable you to express your feelings to both without the emotion of individual visits that I'm sure you're fed up of by now! (I always end up a blubbering mess and aren't able to say half of what I needed to during appts so have found written communication more effective!)

    Best wishes,

    Melissa X

  • That sounds like an excellent idea Melissa and had I have been feeling a little more rational it should have occurred to me but I got myself so get up last night I couldn't think straight much less sensibly, it's crazy to let it get to me so bad I know but I think I'd reached the end of my teather.

    As for your mirena from my experience I would say the slightest worry or strange feeling you have go and get checked, I had an awful time with it and ultimately ended up with a massive bleed when my body expelled the thing, that is not to say it will happen to you but it was a side affect I was never warned about.

    Thanks for replying

    Allie x

  • Sorry to hear your frustration. I think we are all in the same boat :(

    I was given the impression by my specialist that you have to do a course of gnrh to be able to have a hysterectomy. They have to see if getting rid of the estrogen will help your symptoms, and also see if you tolerate HRT, which you will need to take after having ovaries removed. They seem to have a list of things you 'have to' try before you can get a hysterectomy (Mirena coil, ablation, gnrh agonist)..

  • I've tried everything apart from the gnr's all to no avail, which from what I have read is probably more to do with my having both endo and adenonyosis (the bleeding not being controlled)....but I can't see why she'd want to assess my reaction to the hrt because the hysterectomy option was so set in stone that she talked me through the procedure and told me she would leave my ovaries in place?! God only knows how it'll turn out but before I make any decision I am going to ask to see her first and clarify things I think.

    Fingers crossed for all of us that things become easier to handle :)

  • Hi honey , im new to this site but certainly not to endo, ive had the condition sinse i was 18 and now im 33 and five lots of surgery down the line , recent one 3 weeks ago. my endo is rancid,its travelling up to kidenys sticking things together , my ovaries were recently bullied up to stick on my abdominal wall and had to be cut free. I totally understand your frustration and desperation . i spend my time working , and ill, and in between going to gynae and gastro appointments . it may be useful but my endo severly effects my bowel too, if im ovulating or due a period i have chronic diareah , watery in fact , its ike having a viral bug, i lose blood , and inbetween that i have constipation and bloatedness. sometimes i find it difficult to feel positive about anything but carry on regardless, going to work and hunctioning to the best of my ability . i had surgery once and tehre was agastro team in watching, they asked could they pay to research the effects of endo on my bowel, i let them of course , having to eat certain foods, they gave me certain hormoanes to see how my bowel responded to the hormoanes, pain or not , it did have an effect of course, for me anyway . my bowel is governed by hormoanes and endo it feels. im just wondering if they can help the bowel , would it help the pain, is it worth trying before a hysterctomy? they bowel proffessor i see has recently suggested i start peristeen , basically its a bowel cleanser you do your self as he said its the two in harmony making my like so difficult , it aims at keeping my bowel as empty as possible especially if i have pain . if my bowel is full, it puts pressure or the endo, if my hormoanes are rife , it agrivates the bowel . we are stuck in a maze of helplessness sometime, im just so fortunate to now have to excellent consulatnts working in harmony with both conditions . what part of the counntry are you from ? i can reccomend tehm if they are near . my consultant has no reservations about hysterectomy if needed. its only because i havent a family yet im hanging on to the bloody thing, parden the un intended pun

    cheryl x

  • Funny that isn't it you know the endo is affecting your bowel but the gynea's say no!!! Every time I get my period I also pass blood from my back passage when I've told them (for the past 5 years) they say its not possible :(

    It's sounds like you've got a fantastic team your so lucky....maybe they should offer training to the docs who remain ignorant to our many symptoms!! By the way I'm in Lancashire if your any where near :)

    Thanks for replying

    Allie x

  • hiya, yr in the same region as me, where in lancashire are you? im near the airport but moving to hazel grove . im kind of in transition . yes i bleed from the back too, and when im ovulating or due on i pass water not diareah, its awful, sometimes if im constipated ive ended up with a tear . i have constant nausea when on any hormoane treatment and occassional nausea when. most of all its stopped me enjoying things and made me quite anxious, not visibly but inside . you should look up proffessor whorewell for the gastro side and dr pickersgill for the endo side, he is very good .

  • Hi, please come and visit the adenomyosisadviceassociatio... website if you have not done already, and join the facebook page. You are not alone xx Danielle x

  • Hi allmar, I am so sorry you are going through so much at the moment :(

    I just wanted to add three things to what the ladies have already said.

    You said that you'd never heard any positive feedback of GnRHa - I absolutely swear by Zoladex. It does have unpleasant side effects, but they are nothing compared to the endo pain. Over the last 20 years, I think I would have gone mad without my 6 monthly courses giving me a break from that pain.

    Secondly, doctors like to give you a course of GnRHa to calm down existing endo before surgery, it just makes things easier for when they get in there. I suspect that's why they're putting you on to it

    Thirdly - if all of your pain is being caused solely by adenomyosis, then a hysterectomy will solve that problem. However, if there is any endo outside your womb, having the womb removed will not stop the pain, particularly if you are keeping your ovaries. The ovaries are chiefly responsible for producing the estrogen that feeds the endo, but even when the ovaries are removed too, the body still produces estrogen in other places at a high enough level to sustain endo. I do not understand why consultants recommend hysterectomy as a cure or even a treatment for endo. Women go through major surgery with all of its inherent risks and are more often than not right back where they started within months.

    I totally understand why you feel as if you are being pushed into a corner. But there's no coming back from a hysterectomy, at least you could try the Zoladex or Prostap and see how you get on with it, you might be pleasantly surprised

    I hope they sort it out for you soon

    Lots of love xxx

  • At last someone with something positive about gnr's, everything else you say makes perfect sense and backs up everything I've researched. I know that I have endo elsewhere but in my lap (30/7) they said it wasn't active which hopefully bodes well should the surgery go ahead. i think the best thing for me to do is talk to the doc again and get a better understanding of what she plans, and not get myself in a tis like I did yesterday. Fingers crossed its all going to be as positive an experience for me as it is for you :)

    Thank you for replying

    Allie xx

  • No problem :)

    It's a big decision - I've said on here before that I've had times when I've been climbing the walls in agony where I've wanted them to just amputate from the waist down :D

    But ultimately I know that surgery just isn't the way forward for me. Every time they even do a lap they create new scar tissue for the endo to feed from. I have got an amazing gynae who scans me every 6 months to make sure there are no cysts coming up on the one ovary I have left, so I know I am extremely lucky in that respect. In fact, the last lot of Zoladex I had wasn't for a pain break, it was because a cyst had formed and she wanted to stop it in its tracks - 6 months later and it had completely disappeared.

    Also, at 46 I am coming up to menopause so I know this isn't going to last much longer.

    There are lots of things to take into consideration. Make a list of questions before you go and make sure they're all answered before you come out

    Good luck, and feel free to message me if you want to :)

    C xxx

  • Thanks Allie, am going to try and keep with the mirena and see if it improves my endo although am still struggling to get my head around something like that being there which is silly I know! I've yet to speak to anyone who has had a positive experience with the horrid things but am trying to remain hopeful!

    Should've mentioned previously that I too am on Zoladex injections and think they're fab, however hot flushes at 20 isn't ideal! I'd recommend at least giving the injections ago before considering hysterectomy (unless you are certain it's for you)

    Melissa xx

  • Hey Melissa :)

    Gosh, I seem to be the Good News Fairy today! LOL!

    I had my second Mirena put in last Thursday after the first one reached the end of its natural life and my periods came back.

    Before I had the Mirena, I used to flood for almost three weeks out of four, it was ridiculous. By the time it had settled, which took 2 or 3 months, I was down to literally a couple of pink spots a month. Not even enough for a panty liner, really. It's been brilliant, and I love it, hence going back for a second one. I have to say that it hasn't done anything for the pain, but just by taking away that God-awful bleeding it's made things 100 times better for me.

    People only tend to talk about things that have gone wrong, which is why the Mirena gets such a bad press; you don't hear from the ladies who are completely happy with it.

    I hope you get used to it soon. I totally get where you're coming from about the strangeness of having a foreign object in your womb, but eventually you'll just forget about it :)

    Lots of love xxxx

  • Hi Chrissie :)

    Thank you for commenting, such a breath of fresh air to hear positive comments about the mirena as I have so much hate for it after a couple of days and have struggled finding anyone who has got along with it!

    Due to the Zoladex injections, I haven't had a period since December last year when restarting them after an initial 3 month 'trial' although have been told to expect bleeding from the coil - I don't understand this as I thought Zoladex 'shut the reproductive system down temporarily' so it's not possible to have a period - were you on Zoladex while you had the mirena and were bleeding?

    I bled whilst it was fitted on Thursday, but since then haven't had anything at all, just horrid period-like pains that I haven't had for the 10 months I've been back on Zoladex.

    Also, how long did your stomach pains last after you had the mirena fitted? As ridiculous as it sounds, I'm convinced I can feel it - did you think the same when having it fitted initially? Think I'm over-thinking the whole situation.. will hopefully get my head around the idea soon :)

    Melissa xx

  • Hey there, I'm going to give you a little hope. I've done gnr's twice now once in my early twenties and then also this year for about 9 months each time. And yes they did relieve my pain, your first injection may make the pain worse for two weeks but then will hopefully disappear. The bonus of gnr's is that its not permanet, imagine if you had a totally hysterectomy and it didnt work and you where flung into menopause straight away at least if you try thr gnr's you'll know one way or the other. I'm not going to lie to you there are side effects just the same as a hysterectomy but it gave me the insight before I made any rash decisions. Hope this helps xo

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