First consultant appt today

[Lisa2015]

Hi everyone,

I've been reading all the posts on this site for the past few weeks and decided now wash I me to post.

This evening I have my first appt with gynae consultant as my dr has referred me as she thinks I have endo. In november last year I went to the Dr re the bladder problems I had been having for most of the year. Beg of 2014 and Dr said it was an irritated bladder as no infection. By November I'd had enough of the constant toilet trips in the night and during the day. I'd tried leaving it longer between trips but no help. Also at the same time I was experiencing palpitations. My dr did an over active thyroid test, which was fine, and referred me for a bladder ultrasound, which too was fine. At the same time they did an internal scan of ovaries and ok. I've seen a cardiologist and my heart is fine too. I'd also noticed in the run up to Xmas that my symptons were linked to my cycle, hence the Dr referring me to gynae.

My symptoms are lower back pain, upper back pain, pelvic pain, pain in hips, bum, down legs and in pubic area. I also get pain in shoulders and neck and since November my right arm. The symptoms do get worse when I'm on my week break from the pill.

Now I think this has probably been going on for a couple of years. Due to pelvic girdle pain in my 3 pregancies, I've been seeing a chiropractor to help and do Pilates. But since late last year and hence the dr visit in november, I felt that maybe something else was going on, as although my chiropractor said my back was quite good (originally it was awful) that I shills the still be suffering.

Now over the summer of 2013 I suffered really bad with my back/pelvis etc and in the end it turned out I was highly allergic to dust mites and slightly to pet dander. So now on antihistamines. When I was 16 I was diagnosed with IBS. I feel like my whole body is just irritated. I have trouble sleeping and staying asleep - either toilet trips, or woken from pain. Always seem tired no matter how many hours I do get. Had general blood tests and all okay too.

On reading on this site and endo uk, I do think I fit the symptoms, but we shall see.

I have been taking the combined pill for the past 3 years (even back to back packets) and obviously that hasn't helped due to the pain, so that's an option for the Dr to scrap straight away. Other pills haven't agreed with me like the mini pills and the nurse says the coil will affect me in the same way as same ingredient.

So this evening I have my first appt with the gynae consultant. I wouldn't be surprised if a lap is suggested, as the symptoms have been going on for several years.

I'm 38 with 3 children, all who were all conceived really easily and it's only been the past few years that have been the issue, apart from the pelvic girdle pain.

When I was 20 I did have a lap as I had problems linked to my cycle in terms of pains, and they did think I had things like pelvic inflammatory disease for example. The lap showed nothing and was told it might get better if I got pregnant! Ignored that advise and saw a food intolerance test and found out wheat was my pain problem along with sess. Since having the kids the IBS is hardly noticeable and my pains definitely aren't that, despite probably eating more wheat than I should. Tbh stress was a major factor with the IBS.

So phew essay over! We shall see what I get out of the appt this evening, and if they do indeed think it's endo and the next steps.

Lisa xx

[Lisa2015]

Hi Lindle,

Thanks for your reply. Yes I have looked at your post on the symptoms and was surprised at the time how many symptoms there are, and that I had a lot of them.

I suppose it's possible that it wasn't IBS all those years ago. The dr put me on the pill (the one I still take today) at 16 due to painful periods. I have wondered if there is a hormonal element in it too. Think it was the realisation on reading your post about the immune system issues and the allergy problems that made me think that wow this isn't just me complaining and in my head.

I only stopped taking the pill once I got married at 28 and had my first son at 29. I would say it's all got a hell of a lot worse since having my 3rd in oct 2010.

I'm in north Hertfordshire and I couldn't find a consultant on the list but will relook once I've had the appt this evening and what action is next.

xxx

[Tboag]

Hi, how funny I could have written that myself, I'm 39 with 3 sons all conceived easily and third pregnancy caused awful pelvic pain and back pain, ive suffered with liwer back pain for ever it seems and been seeing a chiropractor for some 10 years, but a few years ago the pain started coming round the frount more and more, so in April last year I told Gp I didn't think my other symtoms where due to my back, so she started investigating, had numerous scans ect all clear, a part from a kidney stone that was found after a serious pain flare up and an A&E visit, I was kept in for 2 days then sent home kidney stone was cleared but was nothing to do with symtoms, that was sep, since then ive had daily pain in back hips pelvis, groin down legs, and a constant burning ache, any way I'm now 11 days post first lap, and have been diagnosed eith ENdo excised from behind uterus and ligament a twisted uterus that was apparently straightens out ( no idea what that means due to ask at ️follow up) and also ADENOMYOSIS, server and advanced,

I think you would be right to ask for a lap, but please make sure you get referred to a endo specialist, my surgeon is nit on the bsgge list but is a specialist of adeno endo and laps, so I feel I have confidence in him to do the right thing, he mentioned adeno after he did his first internal on me.

Good luck and let us no how it goes

Xxxx

[Lisa2015 in reply to Tboag]

Hi,

Well I had my appt and was half expecting to be told it was in my head. But the consultant took all my details and I said i had had the lap 20 years ago etc. he did an examination of my tummy - very slight discomfort. Next the internal and pushing of tummy - oh my goodness! Never knew that I had pain in there! But pain got worse as he explored more.

So once I was dressed he explained that my dr had thought endo and that it def was a possibility. He said my insides felt lumpy so it could well be adenomysis alongside endo. Obviously they can't say where the endo is until a lap is done. As we know once doing the lap, if there is any found they will excise it.

He also suggested the mirena coil but did say I could continue with the pill. Has a higher dose of whatever is in it, than the pills with same ingredient. Said that by about 4 mths periods would have either stopped or me hardly anything. But my choice.

I googled him before and it seems he has the credentials. Although it's through the nhs, the appts and treatments with him are at the local private hospital.

Has booked me in for the lap on the 20th may!

Quite surprised really that I got referred and then booked for a lap so quickly. Don't know if this is because of the recent scans etc and my history, or if he's just a consultant that understands endo.

Had to take some cocodamol when I got home as man I was still in pain from the internal. Never had pain like that even all those years ago when I had the lap.

He did say that some of the pain I get in back/pelvis/leg/hips etc, could be down to my problems I've had since having the kids. Which is probably the case but just not to the extent I'm having, into opinion.

Since he did the internal, I've had some of my other pains increased, so i do think there is a list.

So off to research the mirena - any opinions?

Lisa xx

[Tboag]

So glad you got s lap to confirm, but you sound so like me it's wierd, internal hurt me too, and bearing in mind when I had a gyne app in June last year, she never hurt me at all, and sent me away to get coil, even after I told her I didn't want it as i had it before and hated it, Ive got a tilted uterus and she didn't even recognise that,

I've heard good and bad about the coil, works great for others does very little for some and others can't stand it, I had a different coil years ago, hated it felt it all the time, but like I said tilted uterus do that's probly why, if you are going to have it I would suggest you get it when having your lap, because of how much a internal hurt,

If it adenomyosis he will probly advise hysterectomy, Ive got my follow up on 14 so I'll post on here what he says about my adeno.

So pleased your getting somewhere xxx

[Lisa2015]

Yes I would get them to put the coil in when they do the lap. Never had a coil before but guess never going to know if it works for me until I try.

Definitely don't want anymore children so need to make sure it will prevent that, alongside help the endo.

Will see what they say when they go inside and what they discover.

But at least I'm getting somewhere and not getting fobbed off. Think now that they are saying I need the op in the

form of the lap, it has maybe opened my husbands eyes to the fact that actually I might be in pain and it's not just me always saying I am.

Will do some more research into the mirena.

Let us know what happens at your appt.

Xx