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Terrible pain all over vulva area

Posted , 8 users are following.

Yvonne72736
Yvonne72736

Hello again, I've been in really agonising pain for 12 weeks now. At first I thought it was an infected tear so was prescribed Amoxycillin which did help with the soreness of the skin, but it was the dreadful aching all over the vulva area that just continued.Three visits to dermatologist during that time and I eventually ended up in A&E I was in so much pain I could barely walk.I was examined thoroughly by a Gynaecologist Registrar The upshot of that A&E visit and the 3 Dermatologist visits resulted in them deciding it was Vulvodynia, and I've been prescribed 15mg Amytriptiline and to gradually introduce 300mg  Gabapentin daily. Co-codamol 4times daily and Oramorph when needed. Presently I'm up to 200mg Gabapentin and 15 mg  Amytriptiline but it doesn't seem to help much yet. Does anyone know how long it can take to help with the pain? I've been on 10 mg Amytriptiline for 16years and it's always helped but not this time. I'm at the end of my tether and spending most of the time in the house because it's so agonising and really difficult to walk about. Does anyone have any ideas how long these medications can take to kick-in? Please help, really desperate now.

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  • Yvonne72736
    Yvonne72736

    Posted

    Hello again renee,

    Thank you for your reply, that's helpful to know, I never thought of getting pain from using a cream.  I haven't used aloe vera though so I don't think mine is that.  I was told a few years ago by a gynaecologist that I most probably had nerve damage.  He was doing a research programme on women who had had prolonged labours at the pushing stage.  My first baby was 9lb 15. and she took over 2 hours of actually pushing to be born.  He actually apologised for my mistreatment by his collegues from back then and said I should not have been left pushing for that length of time,and therefore had most likely sustained nerve-damage and that the pain I get was probably from the nerve endings regenerating. Coupled with trauma damage from an accident I had as a 7 year old. I know it was only a theory but it kind of makes a lot of sense. 

    However it doesn't help with the rotton pain of course!

    • karen41728
      karen41728 Yvonne72736

      Posted

      Hi Yvonne I was thinking about you this weekend and hoping things were getting a bit easier for you, really hope you get some relief soon, I woke up yesterday with a banging headache it's a bit better today, god if it's not one thing it's another

      Take care love Xx

  • Yvonne72736
    Yvonne72736

    Posted

    Hi again Karen, how lovely  that you thought of me! Ah I do sympathise with you for your headache, I get migraine, so I really hope it's gone now for you.  I hardly dare say but I think I am seeing some improvement. I'm now taking 2 Gabapentin daily and 15mg of Amytriptiline for the pain, it has eased somewhat, although it still breaks through and I then count the minuites until I can take another dose of cocodamol that then makes me able to function for a bit longer. I've tried to manage as much as I can without the Oramorph.

    I know it's great the gorgeous weather the U.K. has been having but for me I don't think I the heat helps at all. How are you finding the heat does it make anything more difficult for you? 

    • karen41728
      karen41728 Yvonne72736

      Posted

      aww I'm so pleased Yvonne you are getting some relief that's good it's about time.

      No this heat is driving me mad sweating and itching everywhere.... I must be mad Iv booked a week in Rhodes for me and my daughter on the 15th thought it might be nice after court think I will be sorry though, did it for my 18 year old daughter really she hopefully starts uni in September

      My mouth has been sore need to watch what I eat love my sweets and chocolate but do need to stop

      Lovely speaking to you Yvonne

      Take care xx Karen

  • Yvonne72736
    Yvonne72736

    Posted

    Hi Karen,

    Just to say every good luck in court, try to stay calm, some hope I know.....been there myself with my first marriage, same scenario.

    but then afterwards Rhodes will be a welcome relief a change of scene does wonders even if it is hot hot hot, you'll enjoy it being you and your lovely daughter!

     

    • karen41728
      karen41728 Yvonne72736

      Posted

      Thankyou Yvonne

      Think I will need the good luck when I see that rat, as you can imagine I'm certainly not looking forward to seeing his face in court.

      I am so looking forward to a week in Rhodes we have a suite with our own pool so at least I can cool off and it will be nice to spend some time with my daughter ,

      I will keep you posted on Friday about court.

      Take care and I hope your feeling better Yvonne Xx

  • Yvonne72736
    Yvonne72736

    Posted

    Hello Ladies hope you are all managing to enjoy August wherever you are? Just to catch up since I last posted....I had an allergic reaction to taking the Gabapentin pills for Vulvodynia last week, and that was after 8 weeks of taking it! The GP I saw in hurry as I was feeling dreadful said if you keep taking it it means certain death! Needless to say I've stopped!! sad However that has now left me with withdrawals that are horrible and the pain has returned although presently I'm managing to carry on with just co-codamol and  Oramorph when I can't cope anymore. So presently I've got to allow the drug to leave my body completely and my GP is being cautious as to what to try next as I am allergic to quite a lot of drugs.  I'm managing to stay positive at present, I just keep hoping against hope that this drastic pain will eventually subside on its own. I am still taking the Amytriptiline and only 12 1/2 mg. so am hoping to up that dosage. Has anyone else on the LS forum suffered terribly from Vulvodynia, I feel sure that there must be a connection, also do any of you also have M.E.?( It's called Chronic Fatigue in some places, though I prefer M.E. as otherwise I think the title misleads others to think it's just tiredness when it definitely consists of much more).

    I do hope all of you are enjoying the summer in spite of everything, I can't tell you how much of a difference it has made to my life just being able to talk/write to other Ladies with such a difficult life that LS brings.

    Hugs everyone,

    Yvonne

     

    • karen41728
      karen41728 Yvonne72736

      Posted

      Hi Yvonne

      I'm really sorry your still suffering and I can't believe the doctor gave you them drugs you would have thought he would have at least checked you after a couple of weeks. I really hope you get some relief soon from this.

      Your right about this sight though at least we have each other to talk to I wish we all lived closer.

      Didn't you say your the same age as me Yvonne I'm 57 had abnormal cells about 14 years ago and colposcopy that's when I was diagnosed by the dentist after a biopsy with lichen planus I do no it's all connected, can't eat what I like sets my mouth off burning and my bloody skin itching I really think the doctors don't like to discuss this but with hpv we need to be careful what drugs we have because I think it makes it more active

      You take care Yvonne Xx

    • Yvonne72736
      Yvonne72736 karen41728

      Posted

      Hello Karen, lovely to hear from you, hope you enjoyed your holiday? I thought I'd replied to you earlier today but it seems to have disappeared....I probably placed it on the wrong forum, sometimes I find the replies confusing as to who is replying to whom! I'm a little older at 65, and I have M.E. As well as LS and Vulvodynia. The GP did ask how I was finding the Gabapentin, but I have M.E. as well I thought the symptoms I was actually getting of allergy were the M.E. So didn't realise until I was having an anaphylactic reaction! Scary! Now I'm back to square one with the horrible aching vulva pain again the GP is cautious to give me anything just yet, and apparently the other drugs are just as rotton to get used to, and who's to say the same thing won't happen! My friend who's an Osteopath mentioned trying Acupuncture but do they do that on the National Health is the question? 

      I do hope your day in court wasn't horrendous and that things are settling down for you and your daughter.

      Sending hugs,

      Yvonne

    • karen41728
      karen41728 Yvonne72736

      Posted

      Hi Yvonne

      Yes it was lovely in Rhodes thankyou I didn't want to come back.

      I think aqupuncture is a good idea but it will probably cost, I read somewhere this worked well for a certain lady so I would definitely give it a go.

      Still isn't finalised yet Yvonne at court my solicitor takes forever we still trying to agree on a pension share if we can't then it's back to court.

      Hope things improve soon Yvonne for you Xx

      Take care

      Karen

  • Yvonne72736
    Yvonne72736

    Posted

      Hi Karen, really glad you thoroughly enjoyed your holiday, trouble is when we return back to the grindstone it disappears like a puff of smoke, so can identify with your wanting to not come back.  Been put forward by GP to visit a Pain Clinic in my area and am really hoping that they might suggest Acupuncture so here's hoping!  Though Lord knows when an actual appointment will arrive.

    The Law takes such a long time to sort out things I do sympathise, and it's always...money, money, money, I do hope you can get a conclusion soon.

    Take care,

    Yvonne

  • silviap
    silviap Yvonne72736

    Posted

    hello Yvonne!

    I dont know if this is related but i am suffereing from such a discomfort in my vestivular area....i got diagnosed LS last april and its totally gone away, but since i had all that medication, clobetasol etc, its all gone, but i stil feel it there some how..i feel it.... and i feel such a weird pain going from my vestibular area up to my ovaries....its not like all day, and is connected with my period since i get worst ovulating or with my period....i wonder if i have also LS in my vaginal area, but as allways, dermatologists cant tell and gynecologist are not the best treating this condition...i am desperated....i got an ultrasound on friday, to see if something is wrong....but i did put clob inside and helped with the pain...so i am so confused as i was not diagnosed LP at all which is a condition that you can suffer in the internal area

    • Yvonne72736
      Yvonne72736 silviap

      Posted

      Hi silviap,

      Oh I do sympathise with you, I know it's horrible isn't it? I just think Doctor's want to help but are at a loss as to how to deal with this pain. A gastroenterologist said you can't get LS inside the body and my dermatologist confirmed that, but that it's LP that can invade internal tissues. So it figures that the pain we get inside the vagina and elsewhere might just be LP I'm thinking. Also I think there's definitely an issue with adhesions from injuries and previous operations, then there's diverticulosis which a lot of us have, and spastic colon/IBS, damage to nerve endings from the trauma of childbirth.....all in all its a blinking mixed bag that we ladies have as crosses to bear! 😒 

      i've managed to scrape enough cash to get to visit an Acupuncure practitioner a week on Wednesday, I'm hoping against hope that it might help with the rotton aching pain I have. I'm so sorry you too are in such nasty pain, my Dermatoligist advised me to put some clob' just inside, so am thinking it must be ok especially as it gave you some relief, hope chatting to someone else who knows and understands what it's like on a day to day basis has helped a little bit, it certainly helps me.😊

      Kind regards and take care.

      Yvonne

    • silviap
      silviap Yvonne72736

      Posted

      Dear Yvonne, thank you for such a good information....i got my results from my gyne and she said nothing is there that she can see, ultrasound was perfect and she checked me perfectly inside, but my sister is a doctor and she told me  we can have microscopic painful ulcers....anyway, Accupuncture is allways a good idea...
    • Yvonne72736
      Yvonne72736 silviap

      Posted

      Dear silviap,

      Well at least you had good news from the ultrasound, and that in itself gives one a boost doesn't it? It must be a comfort to have your sister, I certainly know how much my own sister means to me. Thank you for that piece of information about the tiny painful ulcers, funnily enough I've thought that myself before...after all how painful are the little ulcers we get in our mouths sometimes, there's that advert on TV about those, so I'd already worked out if we got those in the vagina or back passage they'd be blinking painful too. Ah well, onwards onwards, I'm keeping my fingers crossed for the Acupuncture helping, it might even help with the M.E. that I have as well... here's hoping!

      Best wishes to you, hope the sun is shinning where you are.

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