Coping after intimate surgery (Obvious TMI)

[obviousanonymous]

I had surgery several years ago down below - not transgender surgery, I had a skin condition that they said surgery would help - had much of my external vulval tissue removed... they left vital parts and functions OK but there was a lot of tissue removed . I was quite young at the time .

Having therapy at the moment for something else not totally related and they think I might have a bit of post traumatic stress - encouraged me to look in the mirror to see what it looks like now .

It looks a bit of a mess to be honest, it’s uneven/lopsided and there’s obvious scar tissue where I had stitches . Some of the bits that were removed there’s ‘gristle’ and hardened/thickened skin left . The worst and most painful scarring is around my clitoris, to be blunt .

My GP has promised she will have a look in next fortnight or so but said she wouldn’t want to send me back to gynaecology, said further surgery would cause further problems . She did say they might be able to come up with a cream or something to help - said maybe replens or something - said probably looks worse to me than it actually is . Every time I go for a smear or hospital appointment they always remark on it though and drag a doctor in, one doctor told me I had a ‘strange and abnormal vagina that the nurses wouldn’t go near’ so I do panic .

I feel stupid for being so upset but it looks awful . I’ve never had a sexual relationship because I’ve always been too scared, and wish I hadn’t looked in the mirror, it looks horrific .

I’ve never talked to anyone in rl because who can you tell? Never met anyone who’s had surgery like this either, GP says it’s not very common . Not sure where to go for advice but mumsnet seems as good a place as any ... wondering if anyone has been through similar?

Hi, just wanted to reach out and say I'm sorry you're feeling this way. You've been through a horrible sounding procedure on a most intimate part of yourself, and what that doctor said to you is unforgivable.
It wouldn't be surprising if you had PTSD as a result, and you should most definitely insist on some help with this, and with your scar tissue down there. The fact it's stopping you from having a relationship is huge and in my view categorises it as a life changing injury. Doctors need to be taking you seriously, and offering help and support.
On another note, it might help to look at photographs of different vulvas. You may have done this anyway, but they are all different and taken out of context are not particularly beautiful to look at. Also, don't be frightened of relationships, there are people out there who would love you for who you are.

I’m so sorry you’ve had this experience, it sounds very traumatic in many senses.

I’m hesitant to agree with your GP though that a re-referral wouldn’t be a good idea - quite the opposite in fact - was your condition something along the lines of lichen sclerosus/lichen planus or similar? If so, there are some really excellent vulval dermatology clinics, which will also have ties with local gynaecology/urogynaecology services. There are also private options - a brief google has brought up a vulval dermatology clinic at BMI Ross Hall for example, if that happens to be local to you!

No one is going to force you to do anything you are not comfortable with, but there may well be suggestions that can be made to improve things for you - either aesthetically or functionally, or both - topical treatments, revision surgery etc - please don’t let your previous experience stop you seeking help now.

I’m glad to hear you are having some therapy already.

Best of luck whatever you decide.

How disgraceful that your GP is minimising your concerns in this way. If I was you op I’d be straight to a private gynaecologist for a second opinion.
If I you were a man with a disfigured dick they’d probably take it more seriously. Women’s health services here are the pits.

Some doctors are fabulous aren't they OP. I'm so sorry that you experienced that. What an idiot.

I wondered too if it was for lichen sclerosus or HS.

Try a specialist as pp suggested. Also there are many therapists out there who would work with this issue sensitively.

Thank you so much - it was some sort of genetic disorder, they’re not very sure what but said possibly some sort of androgen issue or disorder of development about the midline (whatever that means) . They said it’s not intersex/DSD, but some sort of pattern of malformation around reproductive/urinary tract . Took off most of my labia and skin around my clitoris as they were damaged due to chronic inflammation - gynae said I was risking VIN if they’d kept it . They did their best I think - but hospital said several times they had very little experience, most of the time that surgery’s done for cancers in much older women - I was in my teens .

I’ve never had an intimate relationship, I’m desperate to be a mum and to have a normal sex life etc but have always been told ‘I’ll get over it’ eventually . Doesn’t seem to be happening.
The idea of having sex terrifies me as I’ve spent half my life having that area prodded and poked and talked about, I taught myself to disassociate at age 16 or so - I think I’d end up doing the same with a partner .

Yes if it was a man it would have been handled very, very differently - I had to go to debrief a few years ago after I made a big complaint (mainly about that doctor but other stuff too - I didn’t get any analgesia following that op) and they admitted then a man/boy would never have been treated this way .

I’m not even sure when I’m seeing GP, she said she’d get back to me to arrange a face to face appointment . Hopefully sooner rather than later .

I never thought of trying to see a gynaecologist on a private basis to talk things through; I had that debrief where they went through some stuff with me but just to talk it through with someone who can explain things a bit would help a lot .

Ask your Gp to refer you to Plastics to neaten and tidy everything up as it is having a massive affect on your mental health

This is stopping you perhaps considering a relationship
It has caused you to be diagnosed with PTSD
You are desperately unhappy

Plastics are used to making previous surgery look better if it is warranted
Don't suffer in silence

Oh OP you poor thing.

I had a major repair after my daughter's traumatic birth and have a lot of scarring which is really difficult to cope with. I can only imagine how it is for you. It sounds like a very traumatic procedure and outcome.

I'd also push for referrals to gynae and plastics. There are also a number of good therapies that help reduce and soften scarring, one of which may be appropriate for you.

Really hope you manage to access what you need. Best wishes 💐

Thanks so so much, I’m so glad I posted now, I think I was beginning to get a bit resigned to being in pain . Hopefully I hear back from GP soon re an appointment. It would be amazing if I could somehow get it sorted and close that chapter so to speak and be able to have relationships/ a normal sex life !

OP I'd be very surprised if you couldn't get some improvement to your pain and scarring. You may well have to push for it though. Rooting for you 💐

Have got an appt with GP in two weeks time; hopefully they can come up with something . Therapist has helped me write a list of questions and concerns . Hopefully it’s not as bad as I’m imagining, therapist said it maybe looks and feels worse to me because I’m acutely aware of having had surgery . See what GP says anyway .

Don't let gp fob you off OP, I'm sure there are things they can do to try and improve things for you.

Op I just wanted to say that you have been treated horribly. Well done for making a complaint.

I wish you all the very best.

Well done OP. And good to be talking to your therapist about how to approaxh the appointment.

Don't let gp fob you off OP, I'm sure there are things they can do to try and improve things for you

100% this. If necessary keep repeating the impact it's having on you. Persistence pays off.

Do keep posting if it's helpful, I'd really like to hear your updates.

@colouringindoors

Well done OP. And good to be talking to your therapist about how to approaxh the appointment.

Don't let gp fob you off OP, I'm sure there are things they can do to try and improve things for you

100% this. If necessary keep repeating the impact it's having on you. Persistence pays off.

Do keep posting if it's helpful, I'd really like to hear your updates.

Thank you , I was in floods of tears just talking to the receptionist to book the appointment . I think they understand. GP did say the benefit of Covid is that the building isn’t busy because everything’s largely done over the phone - said they’ll have time for her to go slowly and talk it through properly rather than rush me back out the door . Therapist said she will also give GP a shout in advance (based in same building) - said she will explain re PTSD for me and what previous complaints were about (as neither she nor I are sure of whether complaints get recorded in medical notes, I don’t suppose they do tbh) .

oh bless you re tears, that was really brave of you. It's great your therapist is going to speak to the GPand that the surgery is quiet - they will both really help.

Hang in there

Appointment is tomorrow evening - been cancelled several times as something more urgent comes up so GP has had to put it off . Therapist has helped me write a letter/list on my phone that I can hand to GP when I get in if necessary . GP’s also phoning me the next morning to talk more as seemingly she thought I’d find talking easier on the phone rather than face to face . I’ll be home enormously relieved to get it out the way !

Hopefully the appointment isn’t cancelled yet again but I’m not holding my breath !

Finally saw GP, better than I thought - they aren’t referring me for more surgery as said it isn’t warranted and any more off would likely cause further problems . She said could use bio oil or lubricant/moisturiser to keep skin a bit softer .. but said in terms of appearance whilst it looks bad to me it won’t to others - said all vulvas are different etc and unless partner was a very experienced gynaecologist they wouldn’t know .

Said the treatment in hospital was abuse, but won’t get an apology from people concerned - and said I’ll be referred on for trauma focused therapy anyway to try and help with that side of things . So not as bad as I thought thankfully . I’m shattered now as they did full works - smear; swabs etc but at least it’s all sorted for a bit . GP phoning again tomorrow to talk things through more so that’s good .