Second appointment with the gyne, very disappointed and feeling very down

[MaloushkaPat]

Hi guys,

I had a second appointment with a general gyne on Friday. I was hopeful they would go down the endo route as it's been suspected by several GPs I saw and all my symptoms point to it. After being on the mirena for a few months with very little improvement and the pain getting worse in itself, I was ready to go and push for at least a diagnosis lap as I just want my life back, or at least a more formal diagnosis for an action plan to follow...

I saw a junior doctor first who listened to me loads, and seemed inclined to go for a lap but had to go speak with the consultant after seeing me. The consultant came to see me afterwards, and since talking to her, I just feel the pain is in my head (when I know deep down it's not). Because I mentioned I am constipated the week before my period and after, she pretty much told me the pain is probably due to constipation! I mean, I know I do get constipation, but I don't think this is the cause of my problems... anyway, I feel I am now turning crazy and my pain is all in my head now... I have to try constipation sachet for 3 months, I am also supposed to have another ultrasound scan in 6 weeks and I'll see her again in 3 months... she did say that if I'm not better by then she will do a lap, but I felt very patronised and feel that the affect the pain and other symptoms on my everyday life and my relationship have been completely disregarded... Now I am questioning all my symptoms and start to think that I imagined all of this from the start...

Rant over, sorry about that!!

M x

[Leese16]

Rant away if you need to! Totally understand what you are going through. Way too many people arent taken seriously. You know your own body and know where the pain is better than they do. Took me 20 years to get endo diagnosis. Keep pestering them til they listen. You could keep a day to day diary of how you feel and pain score etc, even mention bowel habits etc so you have ammo to throw at them. Hang in there x

[sanchia46]

Oh dear. I get constipation and still have endo. Keep a pain diary as suggested above and don't give up

[AllWeNeedIsluv]

I know exactly how you feel I got fobbed off with that one all my life waking up screaming as a teen and that's all they'd say or they can't find nothing. It took me to realise at 31 what endo was and that I knew I had it I kept a pain diary and told my docs iv got endo they referred me after their tests. Then I got my lap because of ttc it seems the only way you'll get a lap straight away Is if your ttc if not they'll keep fobbing you off with different contraception etc until theyve done all avenues just a waste of time I think really. Don't feel it's in your head I was made to feel this is my normal for years until I realised it wasn't. Keep pushing and get that lap 💗🤗😘

[MaloushkaPat]

thanks so much everyone, I'll defo start a pain diary in the next few months! I really want some answers and my life back! I forgot to mention that they kept telling me "70% of patients who get the lap don't find anything" to put me off. I am ready for the lap and conscious of the risks, this would not be my first surgery and I kind of know what to expect in this sense! xx

[Fooofs91]

I honestly know exactly what you mean I think a lot of us have gone down that route it’s really horrible I genuinely believed my pain was in my head at one point they had me convinced until I started bleeding randomly , so don’t worry you’ll get your laparoscopy soon and hopefully all will be well. I only just had my diagnosis and I have to admit it was the biggest relief of my life finally knowing what’s going on xxx

[JackieBo]

The pain is so not in your head! How awful that we have to keep telling ourselves this!!

I'm struggling with that today too. It's been 9 months since I finally broke and went to the doctor (it took years of chronic pain getting so severe that it pretty much trainwrecked my life for me to finally go) and now, after 9 months of them telling me to try this new thing and wait, they've finally given me a tentative lap date for early December, so, all in all, a year from when I first went in to when I'll finally have the lap.

I spent the entire weekend down because my pain was so bad by the time I finished work on Friday and I've been cut down to part time hours under doctor's order. The only place for me to go next is off work completely and that just isn't financially possible for me, so here I am, Monday morning, exhausted from a weekend of pain, trying to tell myself I can push through it another day, trying not to cry on my way to work....

This whole vicious cycle is just maddening. I just want to curl into a ball and never move. It doesn't feel like anyone outside of this group understands and it so often feels like people think we ought to be able to just suck it up and carry on, but it is EXHAUSTING living with daily, constant pain, even on the days when the pain isn't actually too bad, it's still friggin' there!?

Hang in there, honey. You're not alone in this, even though it feels like we are when we're isolated at home with our hot water bottles and pain meds.... this is definitely NOT in your head.

[caroljane80]

Hi there I don't want to make you feel worse but you do get this all the time with endo. Its like they try to blame it on the bowel all the time. I'm still getting this now. I even had a bowel surgeon trying to tell me the bowel can just cause pain even when there is nothing wrong with it. I just knew straight away in my gut so to speak that this guy was talking frankly b sh**t 2 months later having gone private AGAIN to the tune of £5000 which I cant afford loads of adhesions right where my pain was ( unfortunately still is ) but at least he said they were there and tried to remove them and some "material" with looks like endo ( yet to know outcome of biopsy of this material. Your GP will generally try marina ( never felt these did any good maybe more harm maybe take it out? by a GP or A and E did mine. Your GP will probably try the pill ( also yet to meet anyone that this helps but up to you). Failing that a referral to a gyne might be a good idea to try the gonadotrophin agonist ( but use HRT or you will have bad side effects from hot flushes etc ) be mindful this isn't a cure but they can be helpful to diagnose if it is endo and a short time of pain relief. I believe that there should be a campaign to let ladies have this for longer than 6 months. If you're lucky then a gyne may do a lap to see. Try to find one that is an endo center although I've had good and bad even from reputable ones but still a general gyne usually not expertise enough to do the surgery. I should cut and paste this somewhere stops me repeating myself lol but keep at it if nothing else keep on and on at the medics you will have to get used to this and used to going elsewhere for GPS or surgery. Be comfortable with it you can do it on choose and book and if your GP is being dismissive go to a different one, I not sure how you do this but maybe a different practice not sure. Thankfully my GP is OK-ish but you have to get referred to a hospital even for the gonadotropin injections and laps and so on. Good luck feel free to ask me anything. I'm kinda stuck with bad pain still 1 year after hysterectomy and several goes at trying to get someone to look and then fins what might be going on. xx

[caroljane80]

I might add that my pain got severely worse after my hysterectomy. Yeah, i had bits and bobs of pain 7 days here a day here but not daily like this I had ovaries removed so it's really hard to get anywhere I've been virtually disabled since the hysterectomy and all ive had is what feels like cover up until I got down south to a totally different trust and consultant. I'm hoping he can help but sadly his adhesiolysis hasn't helped and I don't know what this material was yet that he excised and got biopsied. I see him again on 3 oct 2017. I hope it doesn't lead to another well nothing we can do. I cant live like this I haven't even gone back to work yet a dim dreading it. i can manage off sick but I'm still in agony a good 5 /6 hours every evening often til 2/3 am. The pain seems to vanish on waking or reduce significantly. Yet I've tried fasting eg when due and op and the fast made no difference neither does a bowel cleanse or regular bowel movement or stool softner. I feel my bowel habits are good. Its just weird with the pattern?

[MaloushkaPat in reply to caroljane80]

thank you so much for sharing your story and I feel for you! The pain is daily for me too, for the moment I can manage most of the time but it is getting more and more disruptive with my day to day life and work. I have had to take lots of days off sick in the past few months and it really annoys me and depresses me. I have to plan my social life around the pain and I'm fed up. I know deep down it's not a bowel problems ( i can't believe all the shooting pains I get down below (sorry for oversharing!) comes from the bowel, i have try tackling the bowel before and it made no difference. I'm on my way to work but I have been in pain since 5am this morning, hopefully I'll be able to manage today!!