27 years old .. devastated
Posted , 9 users are following.
hello this is my first post. I have suffered from itching since I was about 5 years old from what I can remember and now in adulthood have always put it down to thrush, sanitary towels are a no no, itchyness usually sets off during the evening/night. I have not ever gone to the doctors about the issue. But I will be making an appointment Monday..
So I am 6 weeks post partum. I ended up having an assisted delivery with the use of forceps, so I have been religiously cleaning and drying my stitches. Upon looking into the mirror I have been wondering why does my skin down below appear white and quite thin?? I have also discovered my clitoris is almost completely fused..I am so upset. Prior to giving birth I have enjoyed a healthy sex life, I devastated that it could be no more in the next months or years..I am only 27 and would very much like to enjoy sex and have the intimacy I share with my partner up until my last days which is a very long time away!! Looking at my lady parts which were once attractive..aren't so much now..I do not feel like a woman. Labia is completely flat, but it is my clitoris which has me feeling scared and upset. I have put the changing shape due to childbirth, as whilst in labour with our second 19 months ago I tore my clitoris during the pushing stage which was sewn and repaired in theatre after giving birth. Obviously now I know that isn't the case.
Will my doctor prescribe me with some steroid cream?? Or will she refer me to a gynecologist to determine what treatment I should receive?? I really do need something to stop the itchiness! It is 03:52am and whilst writing this post I am fighting the urge to scratch. A few days ago I woke up to me scratching the area above my clitoris which has now got a cut and is very sore. I am worried about my chances of having vulva cancer as I have had which appears to be LS for such a long time now undiagnosed. Once again I am only 27! I feel like i'm falling apart at such a young age....
Will the NHS perform surgery to restore my clitoris or will this need to be done privately?? Please any information would be helpful as I do not think my bean has much time
Please any replies will be appreciated even more so from anyone in the UK!
Sade 😦
0 likes, 26 replies
sade56056
Posted
I have which appears to be LS ******
caroline96176 sade56056
Posted
hello Sadie, my heart goes out to you as I was diagnosed with LS in my late 60s although i realised that I had had it for many years. It was the unbearable itch that drove me to my GP who thankfully knew about it and knew what to do. She prescribed me steroid cream which killed the itch and it has never come back, but she referred me to a dermatologist who has given me Hydromol to moisturise aftee every toilet visit, and Dermol500 to use in the bath. she gave me lots of advice on how to live happily with LS.
I now wear cotton undies a size too big, never use soap, wash my hair separately from my bath so that shampoo does not affect my regime, i dont eat sugar and wear big cotton nighties. I dont wear tight trousers and i try to relax as stress can make matters worse.
i only wish that your GP understands this condition and she acts quuckly to soothe your itch as that's awful. I wish you well sweetheart as you start a new life with your new baby. x
sade56056 caroline96176
Posted
Hello Caroline and thank you for your reply (I feel as though I am the only person suffering when that isn't the case)
Does the steroid cream help with the appearance? Texture and colour? Or purely just helps with the itch?
Thank you for your advice and kind words. I will definitely wash my hair separately from now on. I have always worn cotton undies and never wear them in bed. I think my recent flare up is due to having to wear thick sanitary pads after childbirth.
...
Sade
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caroline96176 sade56056
Posted
You are very welcome. I think we all feel frightened and alone when we hear the words for the first time, but once you have found sympathetic doctors who specialise in treating LS, you should be able to find information on a regime that suits you, that makes sense to you. Not all advice is practical or helpful so take your time sorting through it. There are help groups you can join which can be helpful. I'm unsure if steroid cream helps with appearance. As I said, we are all different. I dont think it helped me but it stopped the itch and that was all I cared about. Please dont feel sad. Dont look too far ahead. One day at a time. Enjoy your children and family life
Dont let it affect your future. xx
Wee_Dugie sade56056
Posted
Hi Sade, I am really saddened to hear of your extent of issues that you are suffering. Caroline has given you some excellent practical advice as to what to do.
What you need is the best possible specialist health care to address the issues you have highlighted, and what can be done about these. It is a Vulval Skin Disorders Specialist you need to see - some of these are based in Gynaecology Departments and others are Specialist Dermatologists.
You should first ask your Doctor if they can refer you, you may need to be quite insistent that you want to see the best specialist in your region of the country. You may only be referred to a Dermatologist who will obviously put in place a treatment regime, but what you want to know about is the re-constructive possibilities of restoring the genital architecture and functioning as it used to be. Only a specialist in this would know the possibilities of what could be done and achieved for you.
Essentially you may need to do your own searches online to see what specialist services are available in the area you can easily travel to, so I would look to search terms such as:
.
sade56056 Wee_Dugie
Posted
Hi Dugie and thank you for your reply. I will mention to my gp about seeing a vulva skin specialist. I've googled quite a lot about LS, a lot of the information I have read are american sites. There doesn't seem to be much about in the UK. I live in a smallish town in southern england so I will most certainly have to travel afar if I am to see the right people.
Thank you for taking the time to respond to my post!
Sade
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Wee_Dugie sade56056
Posted
Hello, thanks for getting back to me. I know there is a Vulval Skin Disorders service at the Royal United Hospitals Bath for example, and certainly there is one in Kent at the Kent and Canterbury Hospital, Ethelbert Road , Canterbury which is run by run by the East Kent Hospitals University NHS Foundation Trust.
You do need the best specialist help you can get, once you have a referral, ask the specialist about all potential treatments, particularly the reconstructive surgery you were wanting to know about.
However, do not be surprised if you need to be really insistent and assertive about seeing a surgical specialist as both the services I have mentioned are run by Dermatologists.
Whichever Vulval Skin service you actually go to they may not always be willing to refer you on, or the specialist may even say 'I do not think you would benefit from any surgical procedure' - what you need to do is see a surgeon specialist, for them to outline what is possible, and then for you to base your decision on this.
Good luck and wishing you the best possible health in the future .......
sarb73328 sade56056
Posted
I feel for you Sade. But take heart, with careful maintenance you can still have a good life and sex life too. I am 65 and have fusing of labia which had also started around clitoris, but steroid cream halted that and i am sure also unfused a little of the labia. As everyone says on here - make sure you moisturise as much as poss. Even at your age i think its important to keep the whole area lubricated all the time. I have a good GP and am now under the care of dermatologist also. So find the right doctors and good luck. Enjoy your baby!
sade56056 sarb73328
Posted
Thank you Sarb for taking the time to read and reply to my post. I'm very scared of what the years ahead have in store for me. I will be instilling the importance to moisturise our private parts to my children after reading everything I have read and most importantly not to be embarrassed no matter what the problem is.
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Sade
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beverly52803 sade56056
Posted
sade, you have to put any ideas of embarrassment behind you. Your health is what is paramount, not silly mores societies assign to our bodies. I see a vulval skin specialist, but other than the basics of avoiding soaps, etc there is little they do other than prescribe a steroid which is effective. You need to start that treatment ASAP. But a bigger issue is what causes autoimmune diseases. There is a school of thought that diet matters significantly. It does take time to search on the internet, read books, etc but there is no other way unless you can find a holistic or integrative doctor (sometimes chiropractors) that can help you possibly determine what foods may be triggers for you.
Be aware that the disease is thought to be genetic so you need to keep an eye on your children.
The moderator on this site blocks a lot of links with essential info. I will send them to you via a private message if I can find any. Maybe others can do the same. You are not alone. There are younger women as well as older ones on this site.
beverly52803 sade56056
Posted
sade, I see you've already been blocked. If you were trying to say something to a specific person click on the little envelope under their name. If you were trying to share specific info with all of us try doing so in code. Silly, but that's how this site is.
always_somethin sade56056
Posted
I am 37. was dealing with this for awhile before i actually went to the Dr within this last year. steroid cream helped the itch in time. it didnt help right away for me. my insurance only took care of the cream verson not the ointment. the whiteness went away temporarily and i have not seen any progression since. i still have the night time itch which is annoying. and left side of labia is looking like the baby sister to the right. i dont refrain from sex. i feel that if i stop sex, it will tighten up LoL. so bring it on! i used avocado oil for moisture.
dont freak out. i did enough of that for everyone on this site. and now that ive got a diagnosis and plan, im all good. as the other person mentioned, dont worry about the future. Just focus on now and life will be pretty grand.
Also, check out your lady parts after it has healed from birthing your beautiful child. it might just look a little extra abnormal due to birthing trauma.
hugs
sade56056 always_somethin
Posted
Thank you for sharing part of your story with me. I have an appointment with my gp this friday, seems like a forever wait 😕
I have found a small lump next to my clitoris, it is buried quite deep. I dont know whether this is normal, could it be a gland?
sarb73328 sade56056
Posted
i had the same - gynae told me it was a cyst. Its still there year and half later. I ignore it but mention it to doctor each time i visit now. Also my GP found a raised red area (I cant see or feel) between inner and outer labia on less fused side - dermatologist made no comment. You never really know whether these things are important or not. Neither do the professionals it would seem. I feel well and have no itching, only mild 'buzzing' so have to assume I am in remission. Please let us know what your Gp says. good luck.
beverly52803 sarb73328
Posted
sarb, I had that buzzing feeling also but the gyn examined me before I went away for the winter and said all looked good. The buzzing continued and I mentioned it on this site. Fortunately a poster alerted me her specialist had said it was a sign of active disease. Months later I was back to see the gyn and she informed me the LS had spread and put me on the stronger steroid. Up till then I had been using Triamcinolone. Are you still applying the steroid?
sarb73328 beverly52803
Posted
Hi Beverley, Yes i have heard its 'cell activity' and GP said to apply steroid when i feel it. I am only applying a maintenance amount twice a week (Betnovate). Would you up this? I am due to see vulva dermatologist in July and we are away until then, so am hoping betnovate will work.
beverly52803 sarb73328
Posted
sarb, wish my gyn (specializing in vulval skin issues) had identified the sensation as cell activity last fall. Just said everything looked fine and was continuing to clear.
Since seeing her at the end of April I used clobetasol nightly for a week and now use it 2-3 times a week. Directions were for TWICE, but I still feel something. The sensation has lessened somewhat, but I am feeling some discomfort. Last night I decided to go back to the weaker triam for the third application in case the clob was too strong. Tried using a warm compress first in the hope the steroid would be better absorbed into the skin. Who knows? Women experience this differently and I do think we are left trying to figure out so much on our own as there are no form guidelines.
Can't see the doc again till possibly the end of summer; she plans to open her own practice. My problem is complicated by use of hormone cream for atrophy which creates its own soreness. (Are you using any?) That coupled with my really being unable to properly see anything really creates a constant state of uncertainty.
I have added an oil recommended by an acupuncturist with chinese medicines that is olive oil based . She said there was no problem using it for moisturizing for LS along with the hormone cream. I find it smells like olive oil gone off, but she did say it had a slight odor.
Rinsing off during the day with warm water and baking soda provides some relief.
sarb73328 beverly52803
Posted
Beverley thanks for your reply. I identify with your experiences. Yes i use oestrogen cream for atrophy and originally to help with a cervix 'loop' procedure after abnormal calls found plus HPV. I have carried on using 3 times a week it as it seems to help keep everthing supple. I am clear of the cervix probs now but my LS developed immediately after all that which makes me feel its linked somehow. I was also in a lot of stress at that time caring for my parents.
I agree we all have to find our own way through this, but this is a helpful forum to question each other on and get more information.
Your oil aounds strange - what is it called? I still find borax and emuaid my most soothing remedies.
Good luck with your next appointment and your 'control' of LS. I do believe we can live with this with careful management.