AIBU to question a lactational atrophy diagnosis that is not improving?

[ZippyBlueViper]

10 months pp, breastfeeding and periods haven't returned, im 34. Since dd was 4 weeks been having awful vaginal symptoms. Burning, stinging, itching, hurts to wee, sex is a no go, constantly feels like I've got damp underwear. It's affecting my mood massively because i feel uncomfortable and disgusting most days. I'll randomly get the odd couple of days where i feel like i have a normal vagina but 99% of the time awful.
Been to gp and they said low oestrogen it's lactational atrophy and prescribed oestrogen cream to use once a fortnight.
Went back and they upped to weekly.
Went back upped to daily.
Went back said it is what it is and will take time.
Went back asked for a different gp for second opinion. They said same it's lactational atrophy.
I queried with both doctors could it be lichen sclerosus. Both have said no.
My question is if it is lactational atrophy why isn't it getting better with the oestrogen cream?
Can anyone who has suffered with either lactational atrophy or lichen sclerosus explain what it was like for them?
Aibu in thinking the doctor has got this diagnosis wrong?

Did they test for anything or just assume? Could it be BV? Or an STI? I am not familiar with vaginal atrophy but they should be working hard to address your symptoms since they have been affecting your life so negatively for so long. I would seek further diagnostic tests and potentially complain to the practice. Sorry you’re dealing with this.

Tested for bv and thrush, negative, sti negative. They're saying it's all due to breastfeeding but i don't get why it's not improving with the prescribed cream if that's the case ☹️

I have, but was given oestrogen pessaries instead of oestrogen cream. It helped, however, did not completely clear the symptoms I was experiencing. I stopped breast feeding almost two years ago, and am still suffering with it, so you have my sympathies. I’m not sure if mine never fully recovered as I have the mirena coil.
I do often question the diagnosis as it was never looked into properly and even now they just shrug and reissue the pessaries.

You could request a gyne referral.

@Bananas52 jeez they have assured me it'll go as soon as i stop breastfeeding, but if you're still struggling 2 years later that doesn't give me much hope. Like you say with the shrug i feel the same, like they're not interested in helping me yet it's so uncomfortable living with it! @BreakingBroken i asked to be referred to a gynaecologist and they said no it's pointless as they're busy and you'll be waiting months and you will have stopped breastfeeding by then.
I pointed out im not 100% on the diagnosis they've given me and they just said well they are.

Can I ask how you gave birth only that when I gave birth to my son I had an episiotomy, The cut caused underlying autoimmune problem of lichen sclerosis to come out and I was diagnosed with LS through biopsy when my son was 10 months old

Why have the doctor said it can’t be LS

@mullers1977 what did your lichen sclerosus feel like and look at the start? They're saying to me it's not lichen sclerosus as there's no white patches but how long does it take for white patches to develop?

I had atrophy first and a couple of scales a bit later on,I’m sorry it’s so bloody awful.
tell them it’s making you so depressed and you want a biopsy. Where are you based ? X

@mullers1977 I will go back and push them again and ask for that then.
It just feels uncomfortable all the time. Did you have the white patches before the biopsy? Also it itches round my bum sometimes as well and the skin around my bum feels sore. Surely that can't just be due to breastfeeding?

Some people do better on Vagifem (little tablets) than they do on the creams as they are different forms of estrogen. You could also try intrarosa which has a testosterone element.

Is stopping breast feeding an option to see what happens?

@ZippyBlueViper there is one more thing I'd say for completeness. Hopefully you have been tested for thrush and BV? If not I would insist on this

There is also a condition called Aerobic Vaginitis that is stupidly not recognised in this country. It happens when your vaginal microbiome is disturbed and I imagine that can happen around birth. I'm not saying you have this but please be aware of it. It may just be that the atrophy has not had a chance to heal yet so I don't want to worry you unnecessarily. However in case it helps I'm posting a link to my story and towards the end of the posts I describe a self test you can do.

I hope you find some answers soon. Xxx

https://www.mumsnet.com/talk/womens_health/5190130-beating-a-chronic-uti-success-stories?reply=144539588

Sometime thrush can be a tricky buggar and not show up in tests. If they given you (and your partner) top notch treatment for it to rule it?

my main symptoms were the atrophy and itchiness there were the white patches but very few and I’ve still never really had them x

@Spudulike3 i asked if there was an alternative to oestrogen cream and they said no so it's defo something I'll have to put to the doctor. I've been tested for everything, i have thin watery discharge. @mullers1977 i have like bumps/lumps that itch?

You’ll need a biopsy for Lichen Sclerosis, are the bumps raised ? I haven’t had that x

You need more than a GPs opinion. I was sent to a wonderful dermatologist who deals solely with vaginal problems. I have lichen sclerosis . Symptoms were mostly the most dreadful itching that travels round to my back passage. Skin splits and bleeds. I have had a few bumps.

Have you been swabbed for perianal Strep A? DD had this as a toddler and it was sore and grim and was a 4 week course of antibiotics

@mullers1977 yeah kind of looks like goosebumps like bump/ lump/ pimple. @Vartden what were your symptoms when it first started? Do you have white patches? Gp just keeps saying no white patches so not lichen sclerosus. I'm going to call gp tomorrow and push again. @RandomMess I've just had a quick Google because hadn't heard of that but doesn't look like that thank fully!

I agree you need a vulval dermatologist.

I had similar (but pre kids) and various GPs diagnosed various things including vaginal atrophy - I was in my 20s! I was worried about LS too.

Vulvar dermatologist said it was eczema triggered by a long previous bout of thrush. Followed her recommendations and it slowly went away.

Hi, sorry mine will be a v quick reply as I can hear DD stirring so will reply properly in the morning. Mine started after having DD and I got told mine couldn’t be LS as I had no white patches. Took nearly 2 years and tried every single cream and tablet in the world, but I now have a diagnosis of progesterone dermatitis and the mirena coil in. Not sure if it is PD but because things have settled after the coil I’ve been discharged and left to it

I would ask for a referral to gynae or vulval dermatology clinic because things aren’t improving and your concerns of LS aren’t being addressed. Say it’s drastically affecting your quality of life.
if your symptoms are from low oestrogen (as in lactational atrophy) you would expect improvements with topical oestrogens for sure.

So I've spoken to gp today who over the phone has said they'll prescribe me an estring which is a ring that stays in place for 90 days and delivers slow release hormone.
The bumps have got worse today and are beyond itchy 😫

Have you run your symptoms etc through ChatGPT I know not perfect but might suggest something

I've never had the white patches they show in photographs . It was the intense itching and scaring that led to my diagnosis. Strong steroid cream keeps it mainly in check and I was told to use vaseline to try to keep the skin supple.
The itching can drive you quite mad so I really hope you get a diagnosis. Really press for a vulva dermatologist.