Fudging Fanjos - Friendly Fred (support for general gynae problems)

[shouldnthavesaid]

Hi :)

This is a bit experimental, and I hope it works.

I have suffered a lot of gynae problems over the years, and have struggled to find a friendly support network that isn't a) limited to hysterectomy, or b) limited to gynae cancer.

Admittedly there is the Vulval Pain Society however they are very academic in focus I find, and not so social!

So I thought we could maybe have a thread where we can chat, share experiences, and support each other through what can be unfortunately very embarrassing, and often isolating, conditions.

Thread is welcome to anyone with and not limited to - vulval skin disease (eczema, lichen sclerosis, vin, hydradentitis, vulval cysts), vulvodynia/vestibulodynia, vaginismus, fibroids, painful or heavy periods, PCOS, endo, cervical issues, chronic thrush, infections that just won't go, herpes, anatomical issues.. and any cause is fine, whether caused by childbirth or just there from birth, or anything really..

Em so a bit of biography on me;

I'm 22, I'm a university student studying literature and linguistics and live in Scotland.

I was born with unusually large labia (and I mean unusual). I also have labial/clitoral cysts, vulval eczema, contact dermatitis, allergies to soaps! perfumes various sanitary products etc, vaginisimus, vestibulodynia, problematic periods, chronic pelvic pain.. In 2011 I had a bilateral labiaplasty and partial hoodectomy. I had a mirena coil fitted under spinal in November, and have had several ultrasounds, a transvaginal scan, and 100+ examinations over the years. I'm on to my fifth gynae consultant, have recently started psychosexual counselling (which is about the most difficult thing I've ever started)..

So I hope this works (and not meant to offend, I knoow there are two long running gynae threads, but both seemed specific so thought I could start one that's a bitty specific to other issues if that makes sense, so I hope it's not causing an issue :-))

Will link this on my other thread that I started earlier, see if we can get a conversation going :-)

[shouldnthavesaid]

You don't by any means have to be chronically ill btw, even if it's just an acute issue like a bartholins gland then you're more than welcome :-)

[SolidGold]

Hi ShouldHaveSaid, can I join? I have very painful periods, only for a day or two each month, but so painful that I cry with the pain. Painkillers don't help much. I have a gynae appointment in January and they have suggested a mirena coil be fitted.

I've had one before and it was fine, except I had an ectopic pregnancy so had it removed then. Now my dh has had the snip so no risk of pregnancy, but I've read so many negative things about weight gain, depression etc, I'm a bit worried. Plus the fitting was extremely painful the first time.

You sound like you've been through the mill. How are you coping? I have psoriasis, not normally in that area, but sometimes it flares up, so I can imagine how painful and uncomfortable eczema is.

[ALittleBitOfChristmasMagic]

Hi just came over from other thread in chat to mark my place

[GW297]

Me too!

[shouldnthavesaid]

Hi - sorry took so long to reply! Shitty couple of days to be quite honest, not good at all, dsis (20) is severely autistic and struggling hugely to cope with Christmas.. is it wrong that I cannot wait for Wed to be over?

Hi Solid , and hi again Magic and GW

First of all - Solid, I'm so sorry about the ectopic pregnancy :( two of my aunties suffered the same and it just seems a very distressing thing to go through :(

Period pain's just horrible, I really feel for you :( I was put on a lot of painkillers for mine (ponstan, codeine, diclofenac etc) and have tried the pill before.. The mirena I'm finding a bit tough at the moment as can be quite crampy, it was to be honest awful for the first four weeks or so and has only just in the last fortnight started to calm down.

Period wise I have had one looong bleed (4 weeks) and nothing at all since, just very occasional spotting. Consultant is hoping that's the last of it although she said I might get scanty periods ocasionally for a year or so.

They do say insertion can be a bit awful sore, I was told it's easier if you've had a vaginal birth? I haven't ever had children nor intercourse so in light of that, and the vaginismus, they agreed to fit it under anaesthetic. Had a spinal in the end so wasn't asleep or anything, which helped. Though they say it's more common for them to be done under a general as the anaesthetic effects are a lot shorter and less chance of side effects. Would that be an option for you? Might make it a bit easier?

Can understand the worries about weight gain/depression though (both of which I've gone through without the mirena!).. All I can say is that if it were to go in, and if it did cause those effects, it's easily removed apparently..

Have you discussed it with just your GP/have you seen a gynaecologist? Sometimes family planning centres are staffed by doctors who do gynae work - means you can chat to them without needing a GP referal which speeds things up a bit. Only disadvantage from my experience is that they don't always get access to your notes which can be a pain.

Coping ... not sure if I am to be honest..

Medically wise, am not sure what to think of what's happening. I was supposed to be seeing a new consultant on Friday to discuss psychosexual counselling (they had already done one session, a week before, but the doctor doing it was a patronising cow hard to get on with, so this doctor on Friday was option two) and it went a bit wrong.

She waffled a lot about control - apparently when it comes to people accessing my vulva, I am unnaturally protective and controlling - and then said the only treatment they could offer was three vaginal examinations that would gradually get more invasive (so first appt is one finger, next appt is two and the final is a full smear test).

I don't think that would help matters much, if at all.. Unfortunately I froze on the spot and what I wanted to say, I couldn't. I walked out having agreed to this..

Got home and poured out to DMum (who I live with during non term time). She was very helpful and offered to talk to the clinic on my behalf. Which might be a bit unusual but I was relieved to let her do the talking.. doctor and she and mum spoke a bit. Turns out they didn't have a full history on me (lack of notes, as it's based in family planning clinic) and after discussion, doctor decided I will not benefit from their therapy and has re-refered me to my usual gynaecologist.

Thankfully I do feel able to talk to her - she's lovely, when I had my spinal for the coil she held my hand as they placed it, came back to the ward after and tucked me into bed, all sorts.

I'm going to be seeing her apparently just after Christmas, which is good..

It's shattering though. Am trying to put it out of my head and enjoy Christmas but it's hard!

How's everyone (looking forward to Christmas? :P) :)

[SolidGold]

Shouldnthavesaid, that's rubbish. I think getting your mum to talk was a great idea. I often cannot say or ask what I want to at the doctors and could do with someone to speak for me. Sadly no one around who can except dh and he's not very good at that sort of thing. I hope your doctor will be able to sort out some treatment for you.

A general anaesthetic isn't an option for me, as I am very sick after them and suffer with emetaphobia so that is a nightmare for me. I have seen a gynae about this a year ago but decided against the mirena at the time. Now I have another appointment in January. Unfortunately she wasn't very friendly last time, so I struggled to ask questions. Must try harder this time! I think I'll have to try it, as the pain is frightening and I'm scared I won't be able to get to work when it's that bad and I've just increased my hours as from January. I can't have time off, so need a way of coping. I thought I had it under control with a combination of paracetamol and Nurofen, but the last two months they didn't help at all

[SolidGold]

Really sorry your dsis is struggling. I think a lot of us will be glad when wednes is over. Such a lot of buildup ... We are having a very low key family meal, just dh, dd, dm and df and me. My eldest two are spending the time with their partners' families

[LtheWife]

Was it you who had a thread in chat recently about your mirena shouldnt? If so I'm really glad to hear your problems with it are starting to settle down.

I've suffered with awful period pain for more years than I care to remember, it feels like someone has inserting fishing hooks around the inside of my uterus and is pulling down on them to try and turn my uterus inside out. I used to get a migraine and bleeding tonsils and sinuses with every period too but thankfully that seems to have calmed down now. I do get a horrid dull ache in my hips, knees and ankles though, feels like the bones are being twisted and are about to break. I take mefenamic acid and tranexamic acid which takes the edge off the pain but I still miss two days of work each cycle as it's so bad.

I finally had a diagnostic laparoscopy this afternoon and have been told they found some endo deposits and a small cyst on my ovary. Still a little sore at the moment despite being dosed up on drugs but really pleased to finally have a diagnosis. Got to go back in the new year to find out just how much endo they found and where and discuss my treatment options. Hoping they will be willing to treat it surgically, DH and I are talking about TTC next year so don't particularly want to go down the pill/mirena/temporary induced menopause route.

[shouldnthavesaid]

That were me, yep.. Thank you :D Thankfully it's settled a lot, which is good, it's a little crampy just now (more cervical pain than anything) but I'm also having a very slight bleed so I'm unsure if it's a period.. I'm trying to soothe it by having an ice cold blue wkd and relaxing on the couch with the dog!

Dsis.. oh God it can be a nightmare and very hard for my mam to cope with (single parent, and she's disabled herself, physically). The GP caught her the other night though.. He had come to see my mam and at the time, sister was bawling at me for not making her tea quite "right" - i.e. you effing bitch, you've made my effing tea wrong, etc.. I think the GP got a shock. Police were out the other night too as sister can be a bit violent.. Social worker was on the phone this morning which was quite positive and she seemed to be feeling pro-active, doing things etc.. All good. Eventually (by the end of 2014 I think) sister will be transitioning to supported living.

Anyway - hi, L :D, although sorry to hear you've got endo :( (though obviously it must be a huge relief to have a name for it, and hopefully soon a management plan). I recognise all those feelings, I actually described that pain to my GP ("it feels as if someone has attached a kg of weight to my cervix and I'm trying to push it out, but it's taking my uterus with it") - she agreed and asked if I've seen Nightmare on Elm St, said her pain reminds her of Freddy Kruger with the creepy fingers!!

Hope the pain isn't too bad, hope DH is looking after you well (waiting on you hand and foot? :D)

Away to settle to watch Toy Story with the dog (and probably most of the rest of the UK, haha)

[SolidGold]

Hi Potatoes

I'm not able to talk to anyone in real life either.

I have a gynae appt on 27th January. I don't want to go but have to do something about this.

[FionasFatFairy]

Hi Ladies, I was interested in your thread, although I'm not generally suffering. I have two things to offer which I hope may help.

Solid, I also suffer from emetaphobia, I would always try so hard not to be sick, that when I was, it would come with such force, that it came out of my nose and filled my sinuses.

When I decided to get pregnant, I accepted that being sick was a possibility. Although I still despise being sick, I have accepted that sometimes it happens, I no longer spend hours swallowing frantically trying not to be sick.

As a result, when I am sick, it is less violent, and now normally only comes out of my mouth. It has made such a difference to me. Having said that, I cannot remember the last time I was actually sick (maybe New Year's Eve before last?) but I am no longer so worried when I think I may be sick, which happened late on Boxing Day (when I put my hair up so it didn't get in the sick, sat up in bed reading for a while and only slowly sipped water)

Anyone considering a mirena, you only hear about the horror stories. When I had mine fitted, I was warned to take nurofen beforehand, but I forgot. I agree that it was undignified, but I feel that way about any vaginal exam (I have 3 DC by the way, induced with no. 1 and then 2 medically required CS) the part where they grabbed the cervix with the "tongs" was uncomfortable, but actually I was surprised when they snapped off the gloves as they were finished.

[SolidGold]

Fionas, thanks for the encouraging words. I had a mirena before, about 15 years ago when they were new and had no problems I can remember, except the fitting was excruciating, despite having had two vaginal births prior to that. I wish I'd sorted this when I had the chance, months ago, but hopefully they will fit one now.

They also want to do a hysteriscopy (sp??) - camera examination of the womb because of the mid cycle bleeding I keep having. I am terrified! Anyway, the appt in January is just to discuss things first.

[depankrispaneven]

On the fanjo topic, has anyone had the problem of getting really itchy round there, particularly when tired? So far as I can tell it's not thrush and the occasional search round the internet hasn't come up with any answers.

[SolidGold]

Yes my dh knows to a certain extent, but I'm not comfortable talking about intimate things, so tell him the bare minimum, just enough so he understands why we can't be intimate - I don't like doing anything whilst I'm bleeding.

[SolidGold]

Re my experiences with HCPs, the GPS I've seen seem to know little and shrug everything off as "something you have to put up with". When I go for a repeat visit they can't remember anything about my previous visit do I have to explain again.

I'm ok with examinations, but would hate to be treated under general anaesthetic, as I don't think they have a clue half the time and too many mixups happen.

[shouldnthavesaid]

Hi all - sorry, been a hectic week or so.. although my period is again coming to an end so that's good. Had urgent bloods done last week as GP was concerned I was becoming anaemic but thankfully I'm not so that's good.. just tired/drained basically..

Hope everyone's had a lovely Christmas and new year

Hysteroscopies are meant to be quite "easy" now aren't they (though I imagine that does't subtract from the anxiety, I know I'd be very apprehensive), I think they're sometimes done even under a local?

I had my coil and labiaplasty both under spinal. The labiaplasty I was sedated for and thankfully remember very little of, but I was wide awake with the coil fitting. I found that suited me better, as I was able to chat to the consultant as she placed it/did the scans etc. With the sedation I apparently got very upset (seems it makes you forget, but you are aware at the moment in time, you just forget after if that makes sense) and I do remember feeling horribly exposed when I "came round", there were some thirteen people in the room and I didn't know more than two of them. Being awake meant that everyone introduced themselves to me, which was just so much nicer.

Potatoes thank you x I don't feel strong just now, am a bit down and struggling.. some sort of hidden inner strength maybe.. At the moment, it's coming and going which is a good thing. I no longer have daily pain so it's easier to forget about the situation.. But I do know my feelings towards the area are not normal.. I feel almost completely detached from it, which isn't good. I feel like it's a part of my body that I want noone to access at all, not even me.

And I often worry about it all - there's always talk of designer vaginas in the news, there's a daily mail article again today, and people always say the most awful things. So I spend a lot of time feeling that I have done a horrible thing to be ashamed of, something I need to keep hidden to myself. My consultant once said that as it's been done so well with no scarring etc, that no one will ever tell. I sometimes think it's something then that if I do share with people, will put them off me..

I think it does all have an effect on me daily so does dominate things but I'm not always consciously thinking of it if that makes sense..

In terms of HCPs, I've only ever managed to trust two fully - my GP, and my current consultant. Have met some awful ones which doesn't help, have had some horrible examinations.. My GP's very, very understanding and helps a lot, I usually get a glass of juice/biscuit after which makes all the difference!

Anyway.. sorry for the slightly miserable post.. not feeling brilliant :/ hope everyone else is OK though? xx

[SolidGold]

Oh, shouldnthavesaid, that's no ones business but yours, no one should judge you. No one needs to know if you don't want them to! {{{hugs}}}

[SolidGold]

Sorry you're not feeling too good. I hope you feel better soon. You have such a lot to deal with and are so brave. I'm glad your gp is good.

I don't know a lot about hysterectomies I'm afraid. I wouldn't consider a general anaesthetic for anything unless absolutely necessary. I'm still terrified about the gynae appt, but guess I will have to put up with the pain. The last time I had a GA I felt ill for so long afterwards, I can't face that again.

[SolidGold]

Sorry, I didn't read your last post correctly I thought you were commenting on hysterectomies, but just read it again and you were talking about hysterescopies! Sorry.

You are right, I'm anxious The gynae hold me it will be painful and they could do it under GA, but I'd rather be awake and aware of what's going on.

I also don't want to be taking time off work, as I've been working very part time since last February, but as of today have 3.5 days per week which is ideal. I can't be ill! But equally I can't be ill with period pain

[kazzawazzawoo]

Potatoes, I hope your appointment helps. I have a gynae appointment on Monday to discuss mid cycle bleeding and also the painful periods I get.

[Doingfine]

Wanted to add that if you are looking for a psychosexual therapist their body is COSRT. A GP is likely using a medical model which is goal orientated ie penetration for sex or exam. Other therapeutic models may be more helpful.

[kazzawazzawoo]

Well, I had my appointment today. The gynae seemed very surprised that I refused a hysteroscopy. She did agree to let me try the mini pill for four months, which is a relief.