Confused and Worried...advice please...

[kb21]

Hi I'm new to this site, after being under the gynae consultant for over 3 years things seem little clearer so I thought I'd come on hear and tell my story and hopefully get some advice.

When I was 29, a year after my DD was born I had a tubal litigation. Sometime the following year I started suffering from an achey lower abdomen, varying from mild to severe, sometimes going down my legs and into my hips. Periods got increasingly worse and numerous other hormonal symptoms, bloating, headaches, some facial hair, frequency of urination, stress incontinence, upset digestive system, sore breasts, PMT. Some of these I'd experienced before and but all more noticeable.

GP tested for perimenopause, but thought not by blood results. Consultant referred for US, nothing seen. Given mefanaemic and traxenemic acid, no help with blood loss but made it possible to deal with pain. Consultant told me I was too fat, lose weight, lost 2 stone (with great difficulty), symptoms especially the pain continually getting worse. Bleeding through clothes at work, when taking kids out, bloating so I looked pregnant, heavy abdomen etc etc. Pain getting really bad on any exercise. Elevated CA125 at 105 November last year, repeat test at 45, no further tests.

Feb last year had laparoscopic procedure, no endo seen a few adhesions removed, not extensive, connecting left tube, bowel and peritoneum. Three weeks post op pain back with avengence, urgent referral back to consultant, tried antibiotics to check not got an infection as my left tube looked weird apparently?

Saw different consultant august 2013 he said I needed to try the Prostap to either confirm or dismiss endo, if confirmed then a hysterectomy, if not who know?? I was very much against the Prostap idea but decided it was worth trying as opposed to having unnecessary surgery. Symptoms improved but stopped after 2 months as the side effects were horrendous.

Consultant says he thinks a hysterectomy is best, checked CA125 again and it was up to 60, no comments from dr on this.

Then developed Sciatica in November, dr useless, chiropractor baffled as what he is doing is helping, but he thinks my left hip is all out of wack and can't figure what is causing pins and needles.

Had to call ddoc out in December because I was in so much pain.

finally, saw gp again, as i'm weeing all the time, after every drink, he said 'overactive bladder', did a blood test, gp not concerned, however I noticed my platelets were right on the cusp being high at 448, hb 12.2, wbc slightly high and ts4 11.

also put all the weight back on despite eating as healthy as poss and being active, seems impossible to keep off unless i'm on 1200 calories a day which I find very very hard to maintain.

Whilst I hate to be neurotic about my health all these things have me concerned and I feel very much that if I'm not concerned no one else will be.

any thoughts welcome.

Katie

[kb21]

forgot to say then bizarrely my period lasted one day last month followed by a week of bloating..very unusual.

[wendydee]

Hi. Welcome to our site, but sorry you needed to find us. It sounds as if it all needs investigating, certainly. I would recommend you start off by having a look at ovacome.org.uk

On there you'll find a BEAT symptom tracker where you can check out symptoms of OC. You can record these and take to your next appointment. There are also lots of Factsheets which may help you. You'll find them under 'resources'. It's good that you've turned to this website....you'll get lots of support and advice. There is a support line that's staffed by nurses, but it only runs Mon - Fri, office hours.

All the best, whatever happens, it is good to get it sorted. I remember well the horrific experiences you describe with periods.....it's worth thinking about a hysterectomy to get rid of those IMO.

All the best

Love Wendy xx

[Hidden]

If it was me I would get a second opinion from a gynae/oncologist!

[amaryr]

I am so sorry to hear of your increasingly bad health. It's so worrying, especially when the medics don't seem to be taking it very seriously. I agree you should ask for a second opinion, and I really hope you get some peace of mind and your health takes a turn for the better. This site has some wonderful resources and sympathetic and understanding people posting. Wish you the very best, A XXXX

[goinggaga]

Could be so my things. We're you confirmed with Endometriosis? It can be extremely painful as can adhesions. Second opinion sounds like a good idea to me!!! Hope you get some clarity soon. As Wendy said fill out the symptom hacker and it will be evidence for the GP or Consultant. Best wishes Wendy xx

[kb21]

No they couldn't see endo, when I asked to be referred to the endo specialist team at another local hospital they refused as they said it could not be seen...even though I had some pain relief on Prostap. I've been off the pain killers since Monday as been taking them daily since November and sick of pills. Now feeling sore in left lower abdominal area and heavy, especially after going for a long walk. Also, soooo exhausted its ridiculous, I go to bed every night at the same time as my young children, its been going on for so long it just feels normal to me. It's only when you speak to other ppl you realise its not, I'm 34 not 84!!! The high platelets and low T4 would account for the exhaustion but why I've got these is the mystery. I'm off to the gp's on Monday to get any blood test results over the last 4 years to see if any of these things have got worse. It really niggles me having to do the doc's job when I'm not getting paid in excess of a 100k a year. I also hate being made to feel like a hypochondriac by the drs, they appear to think its acceptable to be in constant pain and too tired to function. This is most definitely not how used to be..

Thanks for the replies xxxxxxxxxx

[wendydee]

If it were me, I'd need to get the questions answered. Bloating, pain, exhaustion, raised CA125......I was there a long time ago. I was diagnosed with OC but it can only be accurately diagnosed when the operation is done. Do fill in the BEAT symptom tracker and ask for another consultant appointment to at least talk about the pros and cons of having the hysterectomy he previously recommended. Have you had an ultrasound or a transvaginal ultrasound examination lately? They are often ways of giving an indication of what's going on. Don't be put off. It's your health and well being.

All the best

Love Wendy xx

[Hilsuk]

Dear Katie, sorry you are having so many problems, it must be very worrying and wearing. I agree with Wendydee, bloating , pain, tiredness and raised ca125 should merit a further ca125 ( and possibly a scan ) - I think they need to be able to tell you why you are getting these symptoms, and ca 125 been raised .

Good luck, is your thyroid function normal too- if under active can cause weight gain and heavy bleeding - easy for gp to rule out with simple blood test if not already been checked - good luck H

[kb21]

Hi, I've had 2 US scans vaginal in the last 2 years and one lap, apparently all normal, apart from my left tube looking odd, its wiggly as opposed to smooth, and some adhesions which they removed. For some unknown reason they didn't take any biopsies of the tube so why that's odd looking I don't know. Also, they don't know what caused the adhesions, but it was a Reg doing my surgery not a consultant who didn't even bother seeing me after my surgery!! It woiuld appear that my CA125 is always raised but I don't think this worries them because of my age. My thyroid results were also odd, normal TSH but borderline low free T4 at 11., from the reading I've been doing this can be caused by systemic illness, the same as the high platelets (also seen in 30% of OC patients).. Hopefully I can get my hands on the last few years of blood test results today to see if this is normal for me or whether things have been changing.

I'm seeing my gynae consultant next week about having a TAH, I am going to voice my concerns.

xxxxx

[kb21]

Well had a very annoying apt with gynae consultant today, who welcomed me with 'have I done the hysterectomy yet?'

I said No and asked him about the additional symptoms I have been experiencing, elevated platelets, urinary frequency and fatigue. He didn't seem hugely interested and then went on to say he didn't know if the hysterectomy was necessary as they still don't have a diagnosis. I asked him why then he had agreed it in January and he said he sees lots of women he couldn't remember.

He has now requested an MRI which at least should definitely spot OC if that is the problem, or anything else which could be causing my symptoms, however that is another 6-8 week wait, I requested an MRI in October '13 and January '14 which they refused to do.

Really, really cross at all this messing around, and his complete disregard for my questions as though I was imagining it all. Why they seem to think its great feeling like crap I don't know.

On the plus side I've given up smoking..

xxx

[Hidden]

Its worth asking for a CT scan, the waiting list may be shorter as the throughput is quicker. The other option is to seek a 2nd opinion from a centre of excellence who may fast track you. It annoys me when this country campaigns for early diagnosis and that means having a scan but they dither. Love Paul xx

[kb21]

Thanks Paul,

I am very young and it is very unlikely to be OC, however they continually do CA125's which are always elevated, albeit marginally and my symptoms continually get worse. I'm so exhausted with it all. If they don't suspect OC why keep on doing CA125's and if they do suspect then do something about it. It seems a continual dither on their part. Very frustrating, perhaps the exhaustion is caused by the worry?? who knows.

Katie x

[dawnieg]

Dear Katie, I googled tubal ligation as I wasn't sure what it meant and one of the websites which came up described post tubal ligation syndrome which you may find interesting. I am sorry you are suffering so much and hope your medical team can help you soon. Love and best wishes from Dawn. x

[kb21]

Well I had the MRI, and I've not had a full break down of results but I spoke to my consultants secretary who confirms I appear to have adenomyosis, so they are going to do a full hysterectomy, whilst I am very relieved and lucky to have finally got a diagnosis with a hopefully straightforward treatment, I find it unbelievable it took them around 5 years to diagnose this!! And it appears the anti-inflammatory's they've been shovelling down my throat to relieve the pain have now given me a stomach ulcer.

I have read many of the posts on here, and find all of you ladies a true inspiration. Whilst I can't begin to understand the feelings involved with having OC, I know how difficult it can be to get a diagnosis and how it feels like you are fighting to get someone to understand and listen. I really, really hope they come up with some more dynamic ways to diagnose OC and spot it early on. I also hope that doctors start listening to women a bit better!!

Thank you for your replies to my post, and I wish everyone on here the best of luck. Love to you all xxxxxxxx