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[Hattie]

    

I've had left and right side muddled up - but maybe that depends on the doc's 'view' or mine ! 

Good to be able to compare notes !

I have emailed a counsellor i know of at my local clinic to let her know about this thread and have asked if she could pass it on to her clients. Patient confidentiality isolates everyone.

Hattie X

[Judith57]

I had a letter from the pain management doctor this morning following my appointment earlier this week and he seems to think that my symptoms mainly stem from Painful Bladder Syndrome type 3C, which basically is the most severe form of interstitial cystitis, I googled it this afternoon and apparently IC is graded from 1-3 and then A-C according to the biopsy results, with 1A being the mildest form and 3C the worst     

He suggests I have one more round of nerve blocks but with the understanding that they will bring temporary relief and I need to find a way of using physio and CBT to manage the pain. BUPA have since refused to pay for any more nerve blocks so that is not going to happen now unless I pay for them myself...

My bladder is having a major flare-up at the moment, throbbing pain in my vagina, raw pain in my vulva, as Hattie has already observed, like a cheese wire being pulled between my legs, really painful anus - that is a relatively new symptom for me! My bladder (or pelvic floor, don't know which) is constantly going into fluttery spasms.

I am trying to stick to a bladder friendly diet to see if it calms things down, I feel that life is something that is happening to other people at the moment while I try to manage these pain flare-ups! Another Saturday spent mostly on the sofa...

[Hattie]

   Judith

Receiving a letter like that is very hard.

Has anything more than amitriptyline been suggested ? The nerve blocks are quite expensive too.

Feeling like life is passing you by is common - another lady i am in touch with locally feels the same has lost interest in her once loved hobbies - i like to pretend that my life hasn't shrunk but it has.

It is not a question of feeling sorry for yourself it is the mental and physical impact of pain in such a private area of the body. To other people everything looks ok and you have to explain why you can't sit normally or for too long. Little is understood as well - in my vulva case my sister in law who is a nurse says why has this gone on for so long.

I've spent four years looking for answers which is i know not what you want to hear - i have pretended to others especially my own children in the beginning but can't any more.

I hope that your partner is supportive - i know i couldn't manage without my husband at the moment who takes off me the things that i can't physically do and then worry about.

I have made contact with doctors in france to see if they can help me as i have a painful spot at the back of the vulva - either a nasty trigger point or the nerve is getting trapped at ischial spine where i had a nerve block done.

My husband is buzzing around looking at all the arrangements which at the moment are going way way over my head - there are no guarantees in France even if they can help me and i am having trouble getting him to see that.

Hattie X

[Judith57]

Thank you Hattie, my lovely supportive partner has just read our posts and said 'oh dear'. I feel so much better when he is here but unfortunately he lives 140 miles away. We used to share the driving, one weekend I would go up to see him and the next weekend he would come and see me but I haven't been able to drive up there since this all started in February so the travelling has all been one-sided!

My mind is going down some very dark alleys when I am on my own at the moment.

Anyway, he has just said 'It's a beautiful day, let's go for a walk in Greenwich Park' so that's what we are going to do 

Bless your husband, he just wants you to be well again.

As you said, it is such an intimate part of our body and mine was always associated with pleasure not pain. There are so many nerves down there to hurt as well once one thing starts.

I have just had a coffee and croissant - both not allowed on the bladder friendly diet. It just feels as if my body is attacking me anyway whatever I do!

[Wanderer]

Morning Ladies, and hi again Judith57!

 Do you remember I said in one of my earlier posts, about the bizarre fluttering/squeezing, just like baby contractions, but so difficult to tell where it is coming from! I think it is the bowel. I am feeling a lot calmer since starting on Venlafaxine,(I know, I know, all the arguments against!), and my head is clearer, and it has given me the chance to take in what is happening properly, with fog and anxiety! And I have also seen my KING of MENOPAUSE Consultant, who has confirmed some of my realisations. I have finally been diagnosed with 1.Vulvadynia, not the usual sore, stinging type, but the tingling, nerve ending type, that can extend into the groin, and up into the cervix and into the anal area. 2.Tight pelvis, that causes an ache into the my buttocks and back.3. Very bad digestive motility, constipation to you and I! When I am very bad with the constipation, I can feel the fluttering either way down in the colon, or high up in the sternum, like a flip!

But what I wanted to say, finally, was, when you put all of these major physical symptoms together, you can see how they are all connected! After all the pelvic floor supports all of the muscles that allow the digestive system to process food (btw, in a previous post, I didn't mean the bowel produced Insulin, I just meant that Oestrogen assists the bowel in processing Insulin, and without it, the Insulin leaks out through the gut.) into the colon, and the musculoskeletal parts of the lower body to move easily. The atrophy of the genitals that cause pain, must also make us contract our pelvic floor muscles, hence why abdominal breathing helps so much!

This is probably just amateur observation, but for the lack of any Professional knowledge, it is down to us!!

Judith57, and all the other PF sufferers, I think we are still on our own with this one, unless we all emigrate to the USA!

WANDERER XXX

[Hattie]

Wanderer

Has the Kof M suggested what you should do next at all ?

btw have you read the foods from our areas thread ? the DKs have been mentoned !

Hattie X

[Hattie]

Judith

Glad that you partner understands - i know my husband is doing his best - i feel so guilty that i am putting him through all this as it is affecting him to.

I will pm you my email - if at any time it helps just to make contact if you are down a dark alley.

I am not meant to drink coffee either due to tannins but if we are in town i often have a one shot latte - you can't deprive yourself of everything.   

Hattie X

[Maryjane]

Morning fellow sufferers........Wamderer Venaflaxine is exactly right thing to be put on there are lots of different combinations we can try I take amitriptyline........I a should help depression anxiety, which keeps us calm which helps are breathing and our pelvic floor from tensing...... b it helps break the nerve pathway from the problem sight up the spinal cord to the brain, as it can become learned behaviour regards the brain looking for it..........your type of vulvodynia is caused by the PN,  just a different way of sugaring the pill.......I am contemplating going to see Stephanie Pendalgast in America as she is an expert physio in this area, another forum I go on ladies from the UK have been there and had very good results, I like Hattie will set the ball rolling for France but the surgery is a very big decision.

As all the consultants seem to agree this is a meno issue re oestrogen......it beggars to wonder if when we get to mid forties we all should go on HRT vaginally and patches/orally, we all hear about the side effects  about HR,but these nerve problems are the pits.

also years of being told to stand tall hold our tummies in are the worst things for our pelvic floors, because the pelvic floor is already using the muscles all the time and we then end up over working them and they go into spasm, also our skin type re collagen plays its part I am covered in stretch marks, hyper mobile people are much more prone to theses issues as are peolpe who have had a life time of constipation and IBS.

it is all about posture, as a horse rider sitting up perfectly straight and always holding in my tummy, along with IBS, stretch marks and three 9lb babies, and a lot of heavy lifting I was a ticking time bomb.

When I see the pain consultant a week on Monday I am going to discuss HRT , I have started the vagifem and gynest cream to see if that helps.

I also wonder why none of us have been offered anal pain killers, like in America I will ask about this to.

Keep walking, and flop and drop those tums and pelvic floors, and breath into your tummies not your chests.xxxxxx

[Judith57]

Oh dear, to top it all, I just went for a walk into the village to try and relax my pelvic floor and ease the pain. On the way back, I stopped to stroke a black cat that was sitting on a wall, I don't normally do that but I had a sudden thought that black cats were lucky. Anyway, the damned thing bit me and drew blood! I have just cleaned it up and will hope for the best. Took my mind off my 'other' pain for a while though!

[Maryjane]

Judith whenever daughter who is a vet gets bitten by a cat she and her colleagues always take a certain type of antib, they are the nastiest of all bites, they eat mice rats etc.

[Maryjane]

Pressed to early.......if it starts to swell or hurt to much off to a&e they can cause blood poisoning.

[Judith57]

Oh dear, I thought you might say that, it is looking ok at the moment. I did look on the NHS website and they did give the name of two anti-biotics prescribed but not Macrobid unfortunately (anyway as we both know that goes straight to your bladder  ). I showed it to my neighbours and they both said it looked ok but I will keep an eye on it xxx

[Wanderer]

Morning ladies! Ouch, Judith57, sorry, but I love dogs, and know where I am with them, but everyone is right, I hope that it has all cleared up now, without a visit to a/e!

Thanks Maryjane, for agreeing Venlafaxine is the way to go, phew! I did try Amitriptyline, but all it did was make me sleep like a teenager, just couldn't open my eyes in the morning!! But they were great when we went to Australia, helped no end with the jet lag due to time difference!! I can definitely feel where all the symptoms are coming from now, instead of one big heap of pain, twitching, and related anxiety. Wave after wave of painless gut spasms starting in the solar plexus, down to the pelvis, which squeezes in response. The Pregabalin, means I don't get the pain any more, and my lovely GP has given me Molaxole, used to be Movicol, to try and help motility, only started last night, but no response yet!

Another day I will get the vulval tingling and weirdness, that goes into my bum, makes me want a bm, and I don't! So defo, nerve problems there! But at least it all has a reason now, sadly, I have to admit the KOM was probably right, damn it!

Is there any thing better than Vagifem for Vulvadynia, that will be my next question when I see my GP next? I am now on Evorel Conti, had a little period after a week, great!

Maryjane, are you really contemplating going to America? Wow, you are not giving up are you, well done! I actually saw a Chiropractor last week, who said my side back muscles were very tight, well they would be, trying to support my "disappearing pelvic muscles"!! She is going to try a "needling" process to try and relax the muscles, in the hope that the pelvic floor my drop a little, mmmm...I can only try!!

Love to you all!

WANDERER XXX

[Hattie]

Wanderer

There is Estring for post menopausal women which is a ring that is left in for 3 months - it delivers 7.5mcg Estradiol Hemihydrate in 24 hours - the ring contains 2mg EH - although Dancing Girl has mentioned it 'running out a bit' before the 3 months.

I think though that others have already said to you to be careful about how much unopposed oestrogen you are using. I don't understand Evorel  Conti but i am sure someone else will be along.

Hattie

[Hattie]

Having to give Gabapentin another try - too much pain this weekend.

Will get it up to 900mg - first effective level and see what happens - it is meant to work well in combination with Nortriptyline but didn't do much last time i tried.

    to all

HattieX