Lost and looking for advice ...

[Mini90]

Hiya, I'm totally new at this and have never posted on a forum before, but I don't know anyone with the conditions I have and this looks like a really helpful community. I have type one diabetes which has never been under control ,despite best efforts and is out with my control (I only say this as I know it can impact on other conditions and or treatments ). I have had issues with my periods and cramping since I was 11, they were so heavy and painful that the doctors sent me for a procedure to get a mirena coil inserted at 15 , purely to stop my periods, which it did. Then last year, around august my doctor done blood tests and found raised androgen s and sent me for a scan. At the scan the doctor was very rude and then told me mid scan that I had polysytic ovary syndrome but gave me no further advice and to be honest,due to her attitude, I just wanted out of the office. I done my own research and found that it explained the excess hair etc and can also effect fertility which was pretty scary as getting pregnant with diabetes is already tricky.

I recently went back to the doctors again as I am experiencing lower pelvic pain a lot and bloating that is out of this world, my GP was really nice and knowing that I've had issues with this before ( had scans etc to see if there was an issue in previous years) sent me to the gynecologist. I decided to take photos of my stomach bloated and normal and also kept a diary of my fluid intake and toilet habits as that is what they tried to say it was the last time ,but I just feel as though that is not the case.

So then I went to the gyn appointment last week , glad to be going if I'm honest as I had been sore and bloated for about three days prior, again I was left running out the doctors office crying. The doctor was very disrespectful and said that I didn't look bloated to her and only offered to examine me after I had said the bloating is so bad that it causes bleeding around my insulin pump cannula because the skin is being pulled so tight, bearing in mind I was wearing a baggy woolly jumper and leggings ( as none of my trousers would fit) and she hadn't even asked to see my stomach standing up. So inlay on the table and pulled my jumper up then she accused me of not relaxing my stomach and pushing it out then proceeded to lightly run the top of my stomach and say she couldn't feel anything. She then said that there is an extremely high chance that it is endometriosis and they could do an laparoscopy to investigate but that she didn't see much point as all they would do if they found it would be to give me birth control. I then asked her if this was how it was going to be from now on, pain and bloating for no reason ,pain and bloating after every time I'm with my boyfriend? She shrugged at me and said yes , there was nothing else they would do for me.

Sorry for this post being so long I am just at a complete loss as to what my options are, what implications they will have on my life and where to get help as the last couple of specialists I have been to see have been so horrible.

Any information and advice would be greatly appreciated x

[YellowMad]

bless you ..did you go to a BSGE accredited centre

[Mini90 in reply to YellowMad]

I just had to Google what that was ha ha so no it wasn't one of they centres, I had never even heard of them before. I had a look on their site though and I don't think there is any even remotely near me ☹️

[Ugne]

Hi Mini90,

Sorry to hear you've gone through so much and still have no clarity about next steps. Sounds like the specialist you've seen wasn't very professional, judging from this response: 'She then said that there is an extremely high chance that it is endometriosis and they could do an laparoscopy to investigate but that she didn't see much point as all they would do if they found it would be to give me birth control.'

Endometriosis treatment is a lot more complex than just putting someone on birth control..

Perhaps its worth trying to see another specialist? Trust your own research, reviews, recommendations. You can ask to be referred to the clinic of your choice, if its on NHS- it's your right. I personally travelled to a clinic in another town, just because they had better specialists there. The local hospital i live next to is classified 'under special measures', i experienced it myself, so i learned that lesson and made sure to never go back there. Because due to their neglect, i now live with long-term consequences.

Don't give up, i hope you get more clarity soon.

Take care and keep us updated x

Ugne, volunteer moderator

[Mini90 in reply to Ugne]

Hiya, No she most definitely wasn't and ro be honest it really upset me to be made to look like a fool. She also said that endo wouldn't cause bloating and only cause mild discomfort, which hoes against what I've experienced and read. I honestly wouldn't know how to even go about looking for a good specialist as I didn't know you could request one or where to look? X

[Ugne in reply to Mini90]

Feeling bloated is one of endo symptoms, but it can also be a symptom of IBS.. Endo can only be confirmed with laparoscopy. The way i researched was I put keywords such as the name of my area, post code, gynaecologist, endo specialist. I then would read what sort of surgeries those doctors specialise in (i found this info on NHS webpage, doctors profiles), and if possible find reviews about them. So for example, i'd trust someone who specialises in minimum invasive surgeries..and has many years of experience performing laparoscopy surgeries & consulting patients specifically with endometriosis or fertility issues..Personally, i found a good one who worked at a private hospital, so i asked GP to get referred to that hospital, despite a longer waiting list. It was worth waiting.

Since you haven't got your endo confirmed, you can't be referred to BSGE clinic yet (they're trained to treat specifically endo patients).

Good luck x

Ugne

[Mini90 in reply to Ugne]

That's great, thank you so much for your help and being so understanding. I'm just a little dubious now about going for a lap as it's a surgery, it'll take me longer to heal and I've read about people who have had it and they haven't found anything but the patient has been left with complications. It all just feels pretty scary and I've been left massively doubting by myself x

[Starry]

Big hugs xxx im so sorry the specialists youve seen have been so lacking in empathy.

PCOS is terribly painful I understand so it's awful they were so unsympathetic.

So treatment for endo varies with what is found in a lap and isn't only the pill. Sometimes surgery is essential for example if endo is near or on organs like bladder or bowel. Also we know that pain symptoms and endo severity don't always correlate, so no one can predict if excision surgery is an option or essential pre lap unless perhaps a nodule is found.

There are lots of general gynaes who don't necessarily know the ins and outs of endo well and sometimes badly serve endo sufferers. So if you do have a bsge accredited endo centre near it's well worth trying to be re referred to it. Also the new long awaited NICE standard is for treating gynaes to as a minimum have a declared "special interest" in endo (means they've done a certain amount of specialist training) so we'll worth finding out if they have. I saw someone who I thought expert simply because they were a gynae Consultant but who turned out to be a fertility specialist who waisted hours talking about my ovaries, then misdiagnosed me with adeno and tried to get me do a hysterectomy. Thankfully the people here set me straight.

In the meantime if you are suffering with bloating an elimination diet can sometimes help reduce bloating. Common things to try eliminating are dairy, gluten, soya and refined sugar and carbs. It varies by individual. I still eat good quality organic soya tempeh and tofu in moderation but not frozen processed soy which is usually European not American. I got on well with a low fodmap diet which reduced my bloat (check out diet vs disease website for an overview). I've come off it now and my bloat has worsened.

I also found taking oregano tablets in the morning and a good quality probiotic in the evening helpful as bloating can also be due to an imbalance in gut flora.

These are just things that helped me and I had stage 4 rectovaginal endo but not PCOS, so it is invaluable to do your own research on places like pubmed as everyone is unique.