Feel like my gyne has given up on me.

[Saralou]

I went to see him yesterday to find out why I'm still in pain and what to do next. But he told me I have 3 options. Have a kid. Have a hysterectomy or take drugs to mask the pain. I'm 24. And in no way ready to have a child but I would love to have them when I am in a position to. So hysterectomy is out the picture and i'm left taking drugs which I'm worried how they are going to effect my life. Specially my work as my struggling to keep on top of my bills as it is. I'm only been able to work part time. I just don't know what to do and don't see things getting any better.

Just wondering if any one els has been though this. Or got any advise I would really appreciate it.

Kind regards

Saralou.

[Hidden]

Hi saralou,

It's honestly a shame as many young & older women ( including myself) have either been fobbed off with drugs to treat the symptoms of endo or just point blank refused to be refered to a gynaecologist to be diagnosed.

I can definitely understand your anxiety as at the age of 24 I was also not physically or mentally ready to have children but now I'm 33 yrs old & a mother of 2 young children I can honestly say that either the effects of child bearing or child birth in general has helped me to manage both my symptoms and side effects of endo.

I'm obviously not trying to push you into a decision to make babies as soon as but as you are waiting or at least consentplating the idea have you considered having something like the mirena coil or implanon implant fitted?

I've personally not had the coil fitted before but before becoming pregnant with my 2nd child ( in 2013) I had the implanon implant fitted in my arm & this would help me in terms of controlling my very bad menstrual/ ovulation pain I used experience in connection to my endometriosis.

It depends on the level of discomfort or pain you are experiencing in the connection with your endometriosis but an hysterectomy is a rather final choice to make at the tender age of 24, but that's easy for me to say as I'm not in your shoes, there's some women especially on this forum that have also sweared by the coil & as a result can almost live a care free life again.

xx

[mablesky]

Hi there

It's horrible when you feel like you are at the end of the road with this dreadful disease I can sympathise.I was in a similar position last year as none of the surgeries I hah had worked pill did nothing so I was told we/I would have to treat the symptoms .I am on zoladex now and mostly good/ok I'm in no way saying you should do the same thing though we are all so different I just wanted my life back and it allows me to work and enjoy life a bit more.I don't who you saw with these suggestions seems a bit out of touch we all know a hysterectomy doesn't always work if you involvement elsewhere in the pelvic area and also pregnancy may only give a brief respite from this.I suggest you ask for another appointment to discuss further in a more sympathetic way ..poor you .

[Impatient]

Did you get the mirena installed and if so has that now stopped your periods and period pains? Leaving you with the other pains that you are struggling to cope with?

[Saralou]

Thank you all for your replies.

I do have the coil fitted and thought this would help. As the first time I had one. (Aged 20) all my pain stopped (after having 3 ops to remove all cysts and endo) and I was able to get on with my education and started planning a career/future for myself.

But just after my 24th birthday (July 2013) I was in ridiculous amout of pain unable to get out of bed on tramadol. In and out of hospital. I had two ops in November when I had the coil changed and the endo removed. So everything gynaecologically was fine. I also had test on my bowel to make sure this isn't coursing my pain. (It was working as it should.)

The pain is manageable now but I get tired easily and the pain is constant. The more I do the more it hurts. Also my periods have stopped. I'm taking paracetamol but it doesn't touch the pain.

But now to be given these three choices. Just seems so... Final. I wish I was ready for children but I don't have the money or the space. My partner is completely amazing and has more than supported me. But we have only been together a year. And to bring a child into the world for my own health reasons just doesn't make sense to me.

I've heard zoladex lot but unsure of how it works. It not been given to me as a choice.

I think more than any thing I just needed to talk openly about what's happening to people that truly understand what it means and how it feels.

Thank you.

[L96kp13]

I have had the zoladex injections. I was only allowed 2 injections which I had 3 monthly as they can cause brittle bone. These injections block your hormones which means its a bit like a mini menopause but don't panic your fertility comes back a month after stopping the injections. Endo obviously gives u pain when it's "time of the month" so if u had the zoladex u would not have that period every month meaning no pain. I have a nodule left that can't b removed and it bleeds cause my hormones feed it but when I had the zoladex it stopped it. I was bleeding everyday for 2.5 years but have since stopped since I had the zoladex. Defo worth a try. It will not do u any harm. Make sure your doctors don't try and fob u off with a cheaper brand tho. These injections cost the nhs £230 so they r not given out willy nilly so they may try to give u a cheaper brand. Stand your ground tho. Hope it works

[Impatient]

Zoladex is not a pain killer. IF your pain is from residual endo left behind after the recent ops then yes it would stop them bleeding and that would prevent the endo bleed from irritating other tissue, but if your pains are from nerve damage adhesions or scarring or anything other than endo - then it won't make any difference to that pain - and you'll be stuck with whole heap of unwanted and un-necessary side effects which varies as to wht happens and when.

The drug in a nutshell, over loads the pituitary gland shuts it down, and as teh pituitary is the place where so many hormones that your body relies on to regulate blood pressure, heart rate, temperature, metabolism, in fact best to lookup what the pituitary gland does. Then imagine all those things not working properly or at all.

How quickly your pituitary gets back working again after stopping the drug varies in everyone, different hormones get back in production at different times .

Ovulation returns on averag at 5 months after the drug is stopped -half of women restarting periods before and half will have a longer wait.

And in quite a lot of patients the side effects are long lasting as there are occasions where hormone production remain supressed for a very long time.

[Saralou]

Thanks again for your time and help.

I have had it before. When I was 21 after my second op. I brought it up last time I seen my gyne. ( on Thursday) but he said it not wise for me to have again so young and he didn't think it would help.

I didn't realise that's what zoladex was. He always refered to it as temporarily menopause.

Have any of you been to see a pain specialist? What can I expect from the pills? And their side effect?

Thanks again.

[Brownlow]

Hi Saralou,

Is your specialist a general gynaecologist or an 'accredited' endo specialist from the bsge list? bsge.org.uk/ec-BSGE-accredi...

It is often the case that a general gynae is not as experienced in endo as an accredited endo specialist and your case sounds a little complicated. I did a very quick scan of your other posts and you mention that your specialist referred you to a bowel specialist who said there's nothing wrong with your bowel.

Hysterectomy or having a child is not a surefire 'cure' for endo. It sounds as though you have reached the limits of the expertise of your specialist and I think it would be worth getting a second opinion. Ask your GP for this and demand and push if you have to. You have the right to choose your specialist on nhs. Incidentally, what does your GP say?

xx

[Saralou in reply to Brownlow]

I'm amazed by all of you lot replying to me and your support. I honestly can't thank you enough.

My gyne is on that list. And I did speak to my GP also on Thursday and she just kind of listened and said she'd put it through to see the pain specialist as soon as she could. So again kind of felt like I hit a brick wall.

But I will take your advise and see if I can see anouther endo specialist. Even just for a second oppion. I really don't like the thought of taking drugs for the foreseeable future.

I've also tried changin my diet. But not seen any improvement.

Thank you again.

[Brownlow in reply to Saralou]

My specialist is on the list too and we are always arguing about my bowels! Ever since my op to remove endo I've had pain on and off over the years that affects my bowels during my period but I'm convinced is driven by endo. I don't suspect it has infiltrated the bowel but something went wrong.

He is also strongly recommending a hysterectomy and oopherectomy. I think it's just what they do when there's nothing left in their bag of tricks. I have decided not to take him up on his kind offer for now until I have more information following investigations. I have a feeling that some doctors feel pressurised to 'cure' at all costs even if the solution they offer has other consequences and might not even solve the issue.

A second opinion might help you figure out where you stand in all this. If you get the same conclusion then at least you'll know exactly what your options are.

Just one other question...was your endo removed by laser or excised?

[Saralou in reply to Brownlow]

I believe it was lasered, I also had adhesions sorted out in my last op.

I completely understand what you mean, they do just seem to see you as a number so they can put you down as "cured" or try and pass you on so it looks like they have sorted you out. Or at least this is how it feels to me. My Gyne keeps saying my bowel is probably playing a part with my pain and has given me stuff to soften it but it doesn't seem to make a difference if I take it or not. I go regularly and it fine (Sorry to much information).

He seems to think that I have endo inside my womb or inside my womb walls, which the only way to be sure is by removing it, and of course if they did this kid would be out the picture. But he said that in a lot of cases having a child helps to remove (or at least stop/help the pain). but as I've said I'm just in no position to have a child.

Thanks again.

[Brownlow in reply to Saralou]

There seems to be a general consensus on this forum that laser is not as good as excision. I had laser surgery 7 years ago and I regret not researching it enough. It seems the success rate is not as good as excision. At least that's what I have learnt recently. For your second opinion I think it would be advisable to insist on an excision endo specialist.

Endo in the womb walls is called adenomyosis. Did you have an MRI? Otherwise he's just guessing. My specialist suspected I had adenomyosis, sent me for an MRI and it turns out it's not adeno which really surprised him. Might have a polyp and/or endometrial hyperplasia. Going for a hysteroscopy to examine further. They put a camera up inside to have a look inside the uterus. Polyps can be removed. Not sure about the hyperplasia. D&C maybe.