Endless Issues - Thoughts and Opinions?

Brownie_Earthquake

Full Member
Hey everyone!

New to the forum and so glad I found this section!

I know this is a super long random rambling about myself, but I wonder if anyone else has had a similar experience and can offer any thoughts:

I was diagnosed with PCOS 8 years ago, and again 5 years ago.
I have the symptoms which I thought were atypical of the condition - weight gain, excess hair, and acne.

Until my recent diet, it seemed impossible to shift even a couple of pounds, and, the weight loss, although fairly successful, has been very, very slow.


I've been told, more than once, by medical professionals here (and in the US) that I simply do not have the condition because I am not overweight enough and do not have enough excess hair!

I have terrible trouble discussing it with my GP, as he is apparently in denial that I have the condition. He has always been reluctant to offer any help or advice whatsoever.


According to my GP, as of last week, due to the symptoms I described (yet AGAIN) it 'sounds like I may have PCOS but, quote: 'do not look like the sort of person who has it so I probably don't'. When I reminded him it's been in my medical notes for years, he was, again in dismissive denial - even though it was on the screen in front of him!

He also told me that acne, quote: 'is in no way a symptom of PCOS, and PCOS sufferers do not have skin problems', just weight gain and excess facial hair only.

Bizarrely, at the insistence of my dermatologist a couple of years ago (who was outraged that my GP had not it a long time ago, due to the PCOS - confused much?) I was prescribed Dianette, but had problems breathing, so I couldn't continue taking it.

Over the past few months I have finally been referred to a gynaecologist (hooray?) over what is being considered an 'ovarian pain problem' and have been back to the hospital, again, for more internal ovarian scans, of which I am sure some of you are familiar with.

The last one, a couple of months ago showed 'both ovaries as non-polycystic in appearance' - apparently it can just 'appear to have disappeared' at certain times, even though you still have the condition, according to the gynae. - according to my GP, quote: 'that is not possible, you either have it or you don't'. Sense my confusion?!

The gynae. finally referred me for a PCOS blood test. I'm awaiting the results of those in the next few weeks. All he wants to do is put my back on the pill anyway, despite my reservations and past experience :(

I'd been reading, more recently, about the possibility of PCOS sufferers gaining weight due to the way the body stores insulin, and, according my my GP's Nurse (more helpful than the GP by a mile) she commented that in some circles PCOS sufferers are being successfully treated using diabetic-related drugs, and additionally, anti-androgens.

I know a lot of ladies with PCOS suffer far more from weight gain than I so far have, but, for me, my recent high-weight was massively signficant to what I had ever known. Again, I may not go out with 'excess facial hair' like apparently all other PCOS sufferers do (according to my GP, again) but that's only because I do my damndest to get rid of it every morning - and spend equally as long covering up my apparently 'irrelevant' acne!


Does anyone else here have as much difficulty with doctors and treatment and denial of the condition as I seem to? What do you do?! :confused:

I have yet another scan lined up for Friday!
 
OMG u must be sick as a chip! Have to say my gp's nurse was more helpful than gp.

I am taking metformin but can't tell u why lol

I have excess facial hair on my chin really but try my hardest every morning and night to try and get rid of it

I have always been on the larger side but iam finding it really hard to lose weight (currently sw) and when I say anything at class they say oh ur not trying hard enough

Have u asked to see a different doctor???
 
I began having what I call lady problems around the age of 16, nothing was done about it until at the age of 21 I had to have an emergency operation on a cyst that had decided to burst. I was then diagnosed with PCOS, I'm now 26 and still suffer from problem skin, easy weight gain (although the amount I've put on I blame purely on myself) and the annoying hairs popping up where you don't want them.

I am under investigation again, as I missed 2 periods and after an internal ultrasound scan and the unpleasant swab, it turns out one of my ovaries looks to have an abnormality that they will look at again in 3 months and somehow I have an infection, which is being treated at present with strong antibiotics.

It's infuriating how some members of the medical profession seem unwilling to help, or don't want to admit there may be an issue, surely it's what they are there for, not meant to turn a blind eye to medical conditions, especially one that can also effect mental health as well as physical. I'm sincerely hoping you get the help you need and would highly recommend switching to a new doctor and reporting your current, as the way you've been treated is beyond appalling.
 
Thank you both for your responses :)

This time my scan came back as positive, AGAIN.

I haven't asked to see a different doctor because it's been going on for so long. I'd never been given any advice from my GP to begin with, so for a few years, I didn't know any treatment was available.

It was only when my dermatologist suggested the Dianette as a treatment due to the acne being PCOS-related that I realised there were options available. As I had such a bad reaction when taking that, it put me off the idea of further pills.:(

Only recently where the symptoms have increased have I futher gone back for more advice.

On a side note MissUno: Your comment about the operation for a cyst is interesting.
I have, for the same duration of the PCOS, occasionally suffered from severe abdominal pains for which I have ended up in A&E over.
As it takes months for an ultrasound appointment, by the time I had the scan, it was really too late to be properly diagnosed, I was always advised that they thought the pain had been due to a 'cyst that had burst' along with the PCOS. I've since been told that an ovarian cyst is totally unrelated to PCOS... but this contradicts what all the nurses told me!


I've been reasearching the use of Metformin and Spironolactone when it's used as a PCOS treatment.

Does anyone use these and find them effective particularly?

Thanks again :)
 
I would keep at them, you know your body better than anyone and if it's clear you have PCOS they should darn well be trying to help you.

I had the Spironolactone but like your bad reaction to Dianette, I found it made me light headed. Turns out it was giving me low blood pressure so I was immediately taken off it. Everything will be trial and error though, so don't give up, especially if you're in pain so often. Don't allow a delusional male GP to fob you off.

I had an MRI scan before my second operation, where a dermoid was detected on my right ovary, as those will continue to grow until removed I had the operation and while they were at it they sorted out the other cysts as well that weren't sorted during the first operation for the rupture.

I really hope you get it sorted, and keep us up to date with what people are telling you x
 
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