To put a complaint in about my GP practice over this?

[Newname10]

Name change for obvious reasons and primarily posting here for traffic. Sorry in advance for the long post.

Woke up last November one morning with extreme vaginal/vulval burning. Was seen by my GP who said it was thrush and prescribed treatment for that. I was told at the time swabs were taken for chlamydia and gonorrhoea. Returned a fortnight later with no improvement to be told swabs were negative for everything and was prescribed emollient to wash with as it was assumed it was a laundry detergent allergy.

Returned to the GP several times over the next few months with no improvement and was told it was dermatitis, prescribed different emollients.

After 2 months of no improvement I paid to see a private gynaecologist, who prescribed a strong steroid (dermovate) and he was under the impression I had been swabbed and was clear of the above stds, thrush and Bv as that’s what I had been told.

Was eventually sent to NHS gynaecologist who said she was swabbing for different stds and bacterial vaginal infections. Had to wait 3 weeks to be told the sample was insufficient and they needed to be repeated by the practice nurse. Arrived yesterday to the practice nurse who said there had been no communication and she didn’t know what she was supposed to swab for so just repeated them all. I then received a letter from gynaecology to say my swabs for chlamydia and gonorrhoea were insufficient and should be repeated, I thought I’d already been cleared of those and they were swabbing for something else?!

My condition is now worsening, now have spotting and pelvic pain and I’m at my wits end!! Any advice would be appreciated. It’s been a very long 4 months

Im not sure what the basis of your complaint would be? What do you think your GP practice should have done differently?

I think you're doing so well handling this so far. Yes I would put in a complaint with the GP surgery because their communication between teams (for referrals out and awaiting results etc) is not good enough.

Then I would ask for a copy of each letter they send. If a health professional at the hospital says they're going to send the results to your GP ask for a copy of that in writing, they can print it off there and then and you could say I'll pop a copy into my GP receptionist etc so that it is date stamped.

Coming back to the reason why you're so unwell... the amount of ve you have had is more than enough now. Another HCP does not need to physically exam you for each appt so decline that part, this is your body and you do not need the added hyping yourself up to go causing more trauma.

Phone the gynae team up and say you were at their clinic on date and you have new additional symptoms of bleeding between periods. Describe the amount of bleeding (spotting etc) and how often and ask them what date that you need to be in for your emergency apt.

Turn up at the gynae team reception desk if you think they can fit you in between patients. You're already under their team if you have been there recently.

I would also contact a nutritionalist in your area and discuss options as they maybe able to reduce symptoms with regards to pasturised dairy or gluten or what ever else they feel might have worsened your symptoms.

Your partner sounds very supportive. Perhaps they could go for an std test and see if anything comes up with them? Then you might be treated for same symptoms as a protective cover?

Bare in mind your body knows who they feel safe with. These symptoms might be part of the ongoing journey you are on following your previous sexual abuse but coming out now that your body feels safe with your new partner... as in not an std but a trauma response to your history.

If you have been to therapy and still have contact with them, perhaps contact them and ask for further evidence based information on the previous paragraph.

You can still go for a pe and when you get there change your mind. You can go in aiming to decline one and feel okay to have one done.

Do not give up, your doing fantastically persevering with the system.

So the first swabs were negative and you were correctly advised about that? what's the complaint for? There's a national shortage of the reagent for TV testing BTW.

Are you me? I had every symptom you have described every std test came back negative although 1 told me I had tric I didnt, it was then said to be thrush countless courses of canestan didnt work got a stronger tablet although I had to take 3 of these over 2 weeks most symptoms subsided then I got BV antibiotic cream for that and everything seems to be sorted now fingers crossed 🤞 GPs were clueless it was the gum clinic I had attended regularly about this so go there its what they do

First, I would get print out of all tests that have entered ordered for you in the last 6 months and the results for each. That will clear up exactly what has and hasn't been done.

I would then go to a gum clinic - they operate separately from gp and should be much more sensitive to your trauma. If you tell them you have symptoms they should see you quickly.

If after detailed investigation they still don't know I would consider whether it's a physical manifestion of trauma. The body can be very strange at times

Thank you for everyone’s support regarding the trauma side of things, it has made everything much, much more difficult. The uncertainty and anxiety of not knowing where the mix ups have been with results has been hard to manage. I had at least convinced myself it wasn’t anything std related when I was given the all clear the first time around but now I’m not sure if that was correct after the gynaecology letter.

I went through this in late teens early 20s. Eventually specialist dermatologist diagnosed allergic eczema.

I had to go back to basics.
Boot allergy washing powder - rinsing twice.

Washed hair over sink.
Cut dairy put of my diet.

Epaderm was the only ointment that made a difference. Plus steroid with flare up.

I also take montelukast and fexofenidine as also developed itching skin condition

Thanks Hakunamatata, can I ask how long it took for your symptoms to clear up after you started following this guidance? I’ve been following all this for 3 months ish and still no relief

Bacterial infections and STDs are not different things. Many STDs are caused by bacteria.

www.nhs.uk/conditions/lichen-sclerosus/

I don't completely understand the need for complaint but of course if you need to file one do so.
You wrote that the practice nurse couldn't find a letter from gynae on records for communication? This wouldn't be the practice nurses fault. The gynae department should send the letter to your gp practice. Was it done privately under gynae? Either way you may need to chase gynae to send the letter to your gp practice.
Gp practice are not like sexual health clinics and cannot do full screening. If you was to go to a sexual health clinic you would get a full sexual health screening.
In a general practice they can do a high vaginal swab to check for thrush, bacterial vaginosis and trichomoniasis. Then another swab for chlamydia/gonorrhoea.
Best thing for you is to keep chasing if your symptoms do not improve. Try to get another appointment with your GP in the morning as you still have symptoms and worsening. I hope you get it sorted

With the spotting and pelvic pain, I would definitely consider uti. Does your surgery have a sample drop in box? (Surgeries that do this usually get you to fill out a form and hand in a sample with no appointment needed)

I had years of unremitting discomfort in the vulval area. Did everything by the book, changed my diet to a yeast-free diet (not at all easy!!), cotton underwear, allegry-free laundry detergent, bathed in E45 emollient daily + after sex, hair washed over sink etc. etc. etc.

I was at an appointment for a laparoscopy and a wee Indian nurse was taking my background. I mentioned my 'problem', how depressed I was about it and what HCPs and I had attempted to resolve it. She suggested Acigel (a vaginal therapeutic gel) saying even if it didn't help, it would do no harm.

I tried it and within a couple of weeks I was symptom free after literally years of misery. Used it regularly for years until one day I attempted to replace my current tube only to find it had been discountinued. I wept. I literally wept sitting in my car when I came out of the pharmacy.

My GP could not recommend a replacement, only confirm Acigel was no longer being produced with no recommended replacement.

Through trial and error (and the misery of my symptoms returning) I discovered Multi-Gyn Acti Gel which works as well as for me as the original Acigel did. I can still use lovely bath/shower products, wash my hair in the shower and, most crucially, am no longer in pain/discomfort.

I have suggested this to a number of women over the years, and the feedback has always been extremely positive.

If you can afford the cost (£10 approx) it may be worth trying?

**@Trez1510 thanks for recommendation. Just ordered from amazon as awake in night with discomfort due to pregnancy so giving this a go!

@MichelleScarn - fingers crossed for you.

For me, it was a life-changer. Hope it is for you too!

Of course it's not irrelevant.

Have you stopped taking the pill to see?

Have you stopped taking the pill to see?

It was the morning after pill, not the pill.

OP I don't have any medical tips for you. I did want to acknowledge the impact of this on your mental health. It's such a small phrase "this is impacting my mental health" and can be so incredibly loaded. I have PTSD from sexual assault and I'd have been having panic attacks and flashbacks if I'd had vulval pain like that, never mind having to expose myself so often and be swabbed - especially by people who dismissed my PTSD. God, it doesn't bear thinking about. Obviously we're different people and I hope it's not been that bad for you. But it could also have been worse. In either case though it's doing something to your mental health. So I imagine that while the symptoms are unbearable, you're actually having to be quite brave to go back again and again and again.