PCOS

[Soph19]

Hi everyone just a bit worried and in need of advice. I had a gynocologyist appointment today regarding an on going pelvic pain from a suspected pelvic infection back in February. I still get the pelvic pain so wanted to get to the bottom of it and the doctor said I have 'slight' polycystic ovaries in an internal scan I had but this wasn't said in a the previous scan I had back in February when this all started but I was wondering whether the predisolone could have caused this or if it's something I've unfortunately always had? The doctor said at normal for women my age (19 nearly 20) but everyone I know who have PCOS struggle to have children! Advice would be appreciated!!

[Michja]

Hi Soph, I had heaps of trouble and over a 10 year period had cysts burst 3 times. It was painful and you need to go straight to hospital if you find your self with a constant stabbing pain down low, this may also make you vomit. I'm sure in the right hands PCOS can be well managed.

I will say I have 2 beautiful children and I think it was due to Endo that I struggled to fall and hold on to the pregnancy's. All the very best.

[Soph19]

Thank you for getting back to me Michja! I don't really know how to feel about it because I don't feel as if I have got any symptoms of PCOS. I take the combined pill as a contraceptive but my periods were always regular and on time, never had acne possibly the odd spot every now and then as normal being a teen, don't have excessive hair growth or sweat etc the only thing I can relate to is the pelvic pain and different doctors say 'oh it's just down to your rheumatology problems' with the behcets and also fibromyalgia, I just don't know who to believe! I don't know whether I'm in denial or whether to go back to the gp and ask for a second opinion and explain my worries? The first internal scan showed fluid around the ovary but this time it wasn't there and he said it could be anything but I wonder if the antibiotics cured that before? (No STD btw) surely they would have picked up and told me if I had slight PCOS from the previous scan aswell? Also this gynaecologist said my womb was tilted slightly which my mother has as well and no endometriosis. I'm Confused

[Michja in reply to Soph19]

With my PCOS the Dr's could see the cysts on ultra sounds through out my years but I too had none of the usual symptoms. I was on the pill to help which is a good idea if it agrees with you and you can miss actually getting your period, therefor not developing cysts. I'm probably a fair bit older than you (44) and have had trouble with that entire part of my body from my first cycle. Anyway, I had a hysterectomy last year (left the ovaries) and I feel wonderful just fantastic. The gyno couldn't believe how large my uterus was and in his words, built for someone twice my size. Due to a large amount of Endo it had all connected to the uterus, bowel, front wall of tummy and right leg ligaments. He also said it was like vagarious veins through it, just horrible. He thinks it would have been due to BD.

Your Dr's are aware of BD and they will be able to see most things on ultrasounds, internal and external. I'd stay in contact with your gyno and if pain persists don't ignore it. Although difficult at times I found regular exercise eg: Walking and Pilates/Yoga helped me relax. All the very best.

[Marushka-k in reply to Soph19]

I know this is a few days old, Soph, but I really wanted to add something.

If you feel you want to go back and talk to your GP, then you should. If you feel that your current GP would not be amenable or approachable, then do your best to find a better GP.

Having the right doctor, that you can talk to about any and all of your worries - again and again if need be - the kind of doctor that will be supportive and explain things a number of times, and refer you to another specialist if that is what you want - is so important.

Living with this condition is extremely stressful and It is essential for your peace of mind to have a have a kind, understanding, approachable GP.

[Soph19 in reply to Marushka-k]

Thank you for writing back! I do want to go back for a second opinion I felt as if they doctor was fobbing me off just giving me any explaination for my pain. All I wanted to know was whether it was behcets related or if it was this PID keep coming back but he seems to think I didn't have a PID in the first place but he wasn't the one who diagnosed me. He was awful, didn't answer my questions I had and didn't reassure my worries about struggling to have children and just said 'why are you worried anyway your to young to have children'. I'll give it a few more day for my notes to be sent to my GP and go from there.

[UKADMIN Partner Behcet's Syndrome Society]

Hi Soph19, if you are in the UK and are not currently being seen by doctors at one of the Behcet's Centres of Excellence. Then you may want to ask your GP for a referral to one of them. They are in London, Birmingham and Liverpool. Email us for further [e-mail]

Best wishes to you.

[Soph19 in reply to UKADMIN]

I don't see any doctors there, I see a rheumatologist privately he only has 2 patients with behcets (1 being myself). Would I need him to refer me to the behcets center of excellence or is something I'd be able to be referred to by the nhs?

[UKADMIN Partner Behcet's Syndrome Society in reply to Soph19]

Hi Soph, I believe that he may be able to refer you, but you could ring them to find out. You may need a GP referral. See details here: behcets.org.uk/liverpool-ce... Good luck. x

[janh]

Hi there, I've had pelvic pain forever. it used to get a lot worse when I ovulated. There is a name for it . I can't look it up at the moment but if you search ovulation pain, it should come up. It used to hurt so much that going for a wee could be agony. it lessened as I got older and past menopause, but I still get pelvic pain. I don't know if it's got anything to do with the illness or not. a A lot of my friends suffer with it. Scans don't show anything and I think that it's sometimes just an unexplained syndrome. My son has groin pain and that's been checked and again it's common in men and is unexplained. Its painful and a nuisence but I never found anything that helped apart from paracetamol when it was really bad. It helped when I wanted children as I k ew when I was ovulating . Have a great weekend x

[Michja]

Hi Soph,

I think if possible a trip to the BD center would be helpful. You are still so young and you don't have to live in pain. Just wondering if you are on any medication for your BD? Just following up this convication as I had pain all my life and the doctors didn't know. Hope you are getting help. x

[Soph19 in reply to Michja]

I take a low dose of Colchicine and predisolone. It hasn't helped with the pain what so ever only mouth ulcers! I'm struggling to find pain relief nothing works