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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.

0 likes, 52 replies

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  • Yvonne72736
    Yvonne72736

    Posted

    Hello Ladies, thank you SO much for your quick replies, it really helps to know I'm not alone in all this.  It certainly is REALLY difficult to deal with you are all so right! Thankfully my husband and family are understanding and particularly my husband of course, I realise how lucky I am and I focus on that thought to get through.  Thank you for all your tips and support.  Fortunately the dermatologists I visited all said that the LS was acquiescent and the tear healed.  They think the pain is caused by trauma damage to the nerve endings of the vulva, maybe a combination of an accident I had as a child and a long labour with a 9lb 15 baby.  Although she was born...43 years ago now!

    Once again, I'm so grateful that you all replied! It makes me feel much less alone, and just to know someone else actually understands how difficult each day is with this rotton thing.

    Hugs everyone. 

  • Yvonne72736
    Yvonne72736

    Posted

    Me again Ladies, sorry just realised I didn't answer the questions.  I think I've permantently got a hot water bottle stapped to me 'Sue', but I will try that alternating hot and cold and see if that does anything.  And I will look into the vagi wave....ha ha! sounds fun....;( not!

     And warm baths do help 'renee', just wish it would last when we get out.  Thanks for reminding me about brocolli etc, I've just said to my husband I'll make some home-made coleslaw as well.  I'm drinking pints, water, cranberry, prune juice, peppermint tea, camomile and spearmint tea, and I find Linwoods - Flaxseed, almonds, brazil nuts, walnuts & co-enzyme Q10 with my breakfast cereal and loads of fruit during the day helps with the constipation, oh and plain pop-corn.

     I agree with you 'danni', as you mentioned the pain does seem more deep-seated within the vulva, not just at skin level.  The pain does wax and wane, though never actually goes altogether, I agree, going outside where lets face we do walk differently than we do around our own home, does aggravate the pain.  The pain's hellish! When I went to A&E I couldn't sit still at all, I felt I had to keep moving, I just couldn't get comfortable any which way.

    'karen' your divorce and the consequent stress must be aggravating all the problem, oh! I do sympathise with you.  Having had similar happen to me long ago now thankfully, I can still remember all the difficulty and stress it puts on you. I do hope things settle down soon for you.

    Kindest regards Ladies, thank you for chatting, it definitely helps.

     

    • renee77108
      renee77108 Yvonne72736

      Posted

      The aching deep pain does subside after awhile...it is like you have suffered some sort of trauma...like riding a man's bike and slipping and hitting the crossbar...and getting a deep ache.  I've had it more than once and do have a bit of it now.  I believe it can also be a result of some of the cream or ointment type medications...as I believe you can have a sensitivity to them after using them for awhile as they do soak into the skin layers. I have just a touch of the ache now so have backed off using my traditional methodspure and am going with just the pure coconut oil for a bit to see if it subsides.  Certainly don't want it to flare up again as I now how awful it is from past experience. 
  • Yvonne72736
    Yvonne72736

    Posted

    Hello renee,

    Oh thank you for that! I didn't know about that one at all.  At least it gives me help in that it might not be forever.  After so long I was beginning to think there might be no light at the end of the tunnel. It's such a nasty thing to deal with isn't it?  Have you ever had to take Gabapentin and Amytriptiline?

    • renee77108
      renee77108 Yvonne72736

      Posted

      I don't recall what I used...but remember that it didn't help much. It finally just resolved on it's own.  Just do whatever makes you most comfortable.  I remember that being off my feet seemed to help.

       

  • Cuppa_T
    Cuppa_T Yvonne72736

    Posted

    Hi Yvonne. So sorry to hear that you are going through such pain. I sometimes try a hot water bottle when the pain gets so severe across my lower abdomen and up where fallopian tubes are supposed to be. (mine's gone with hysterectomy so not sure why so painful). Perhaps a small hot water bottle would help you too. Other than that... have a cuppa T and know that we are all sharing it with you in the spirit and giving you lots of love and hugs!!! This too shall pass!!
    • Yvonne72736
      Yvonne72736 Cuppa_T

      Posted

      Hi Cuppa T,

      What a lovely comment that you posted, thank you SO much it made me smile and I definitely feel all those hugs!! Right....I'm off to fill my hottie bottle right now and make a cuppa T!!!   wink)

      Hugs and love back.

    • silviap
      silviap Cuppa_T

      Posted

      hello Cuppa T!

      i wonder if what you mention is kind of normal....my LS is gone but i have such an internal discomfort....like in the vestibular area, feels like candida and this pain/discomfort irradiates to my ovaries.....i got tested for candida etc and all was good, but i wonder if after all that medication all your nerves got like all messed up? i had a pelvic ultrasound on friday and will not have results til the 10th...i feel all that in my internal skin....i got also diagnosed ny LS...not LP which can be located in the internal area....i dont understand

    • Cuppa_T
      Cuppa_T silviap

      Posted

      Hi Silviap

      I wish I knew what the answer is to this and as we all know by now, the medical practitioners cannot tell me either, so I would love to hear what the results of your pelvic ultrasound will be. Will u please keep me posted? The pain/discomfort in that area still continues and once again, after going around in circles from derm to gynae to Gp, the gp eventually has an AHA moment and tells me it is the colon!! (yeah right...what about the colon?) and prescribes medication for the colon. I know its not that, but sometimes I get so tired of the run-around that I just shake my head and leave. Anyway.. I took the colon medication (2 months now) and no relief. Pain is still there, all across the lower abdomen and into fallopian tubes/ovaries area. I do not have ovaries, taken out with hysterectomy in 1999. Discomfort in the bladder area as well, but luckily not burning when passing urine, but I can feel.. something is not right there. I am still using the Salazopyrine 500mg tablets for the LP on legs and thighs and somehow the LS is also very well-behaved at present since taking the tabs. (not sure if the salazopyrine tablets are helping the LS as well). Drinking plenty of water though, ( salazo tablets are very detrimental to liver and kidneys) cut down tremendously on sugar and dairy, trying to stay gluten free where I can and when the abdominal pain gets unbearable, I use a hot-water bottle and get under the blankets. So sorry that I cannot throw any other light on the subject for you right now, but would love to hear your results and perhaps the way forward. So many things that we don't understand isn't it, but don't worry.... we'll get there!! Take care. xx

    • suedm
      suedm Cuppa_T

      Posted

      Have you thought your pain might be adhesions from your operation? Occasionally a stitch may not be absorbed by the body and remain to be a nuisance ...perhaps you could ask for an X-ray and or ultra sound.. Sometimes the adhesions will make the gut go into spasm. ?..irritable bowel....Also diverticular disease will make for a very painful tum.  After the age of 50 I was told half the population have some diverticular changes to the gut most are not a prob, but occ the pockets in the gut become inflamed. 

      The bladder can also have stones or become painful, not the same as cystitis, but blood may be present in the urine. I do feel for you, I had a pain for ages in my right side diagnosed as an ovarian cyst, couldn't be operated on cos of all the adhesions. I knew I had these when I sneezed!

    • silviap
      silviap Cuppa_T

      Posted

      I will def keep you posted.

      Not sure yet if the problem is that i have LS in the vagina and ulcers create all that storm, but seems like  you only can have LP there, not LS...but i have been only diagnosed by LS!

      They don't have much answers for our condition! sad

      Thank you so much!!! smile

    • Cuppa_T
      Cuppa_T suedm

      Posted

      Hi Suedm

      Thank you for throwing a bit more light on the subject. Will definitely keep my eye open for that! Had a urine test done about three days ago and luckily all was clear. Take care and all the best. xxx

    • silviap
      silviap Cuppa_T

      Posted

      Hello!

      so i got my utrasound and all is good....so i have no idea....the doctor said, no idea...funny..but she told me to rest from medicines for a while and maybe will help, anyway i am free from oinments now

  • callianne_65675
    callianne_65675 Yvonne72736

    Posted

    It's strange you mention this as I would not have known what you mean, however, today I have felt as though 'I have fallen on a bike seat' if that makes any sense? I have pain in the vulva, inside the vagina, oh all over. I rinsed with warm salt water and it eased somewhat. My LS 'sore' was infected and I'm on a topical  antibiotic which helps. I find salt water very soothing most the time. However, I can try something that will work for a while, then it won't work. 

    I find it interested that someone commented that walking can make it more painful. Gosh, perhaps I have been walking too much in a bid to get fit. (Ugh!)

  • Yvonne72736
    Yvonne72736

    Posted

    Hi call inane

    It does feel like the moment just after you've fallen onto a cross-bar of a bycycle, terrible aching everywhere over the whole vulva area, walking and standing, even sitting seems to make it worse. So I'm resting as much as I can to try to allow everything to settle down... I hope!

    • renee77108
      renee77108 Yvonne72736

      Posted

      Yvonne...I felt this coming on and had not experienced it for awhile. I traced mine back to a sensitivity to the aloe vera gel...I had used it for 10 weeks straight and had just learned that you can develop a sensitivity to it if used over a long period of time. And yes, the walking and standing does make it worse.  I stopped the aloe for a few days and used the Manuka  honey at night as it is very healing. The ache was 95% gone by the next day.  Now I am alternating the aloe vera gel with the coconut oil...and as I have less symptoms now am not using it as much...and things seem to be fine now.  And yes, diet changes do help as well.  Especially eliminating sugar.
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