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[CLKD]

Suppositories are absorbed quicker than any other method of medication 

[Wanderer]

Good morning ladies. Wow, you really know your stuff, Maryjane and Judith57! My spasms are in two places, I either get them in the pelvis when the VA is bad, or in the stomach when my digestion is struggling. I have bad constipation from time to time, and that seems to be when the stomach spasms are really bad, no pain, just squeezing, enough to wake me up! I also get like a vibration. It is always worse after a "bad" BM, guess that is the pelvic floor trying to relax, but it can't! I have started taking Flax/Linseed with my food, both oil and ground, to help motility, but my head is spinning with all the pills, patches, lotions and potions that have been recommended!!

This vulval specialist that you mention, is that the one that you PM'd me about, Maryjane? I am a bit lost now!!

Wanderer. xxx

[Maryjane]

Yes that is the one I recommended, it is a way of ticking off everything she is so thorough.

I have flaxseed every morning with my porridge. Yes bowel movements will make it worse if constipated, that is a huge no no with pelvic issues. When I sit on the loo I have a block of wood to put my feet on, this puts the pelvis in a perfect position for " going", look up something called a " squatty potty" lol that is what the wood is doing, but it was free, just need the right height, roughly two old type yellow pages.

I empty my bowels with minimum pushing in seconds, to avoid annoying the PN nerve. There are massages you can do before you "go" so that you have moved it along without any pushing.

So your head is spinning, I would start off with the Vulva specialist I mentioned, to rule out anything else skin wise going on, then physio, she will tell you if she feels you need to see the uro/gynae J57 and myself are using, there is another lady on her who was recommended by a different consultant to see the uro/gynae we are.

Regards the lotions and potions, I have managed to get away with minimal, however I have also managed to really " nurse " this problem, I just take 15mg of amitriptyline , and a antihistamine, I am also on week nine of rotational antibs for the pretty bad bladder infection I have had also.

So far I have had no side effects from the antibs, but will be going to the vulva specialist when I finish the course for swabs to be done.

I am one of those that has to know what I am dealing with, as most of the gynaes/gps haven't a clue, I may not be/get completely cured but it stops lots of unnecessary investigations that can make it all worse.

The key is just trying to get the pelvic floor to relax, which is easier said than done, and by the book by Amy Stein about pelvic pain, explains it all.xxxx

[Judith57]

Hi Wanderer, I agree with MJ. Go and see the vulva specialist. She has confirmed that I have no VA whatsoever, the first Gynae I saw said the burning pain was caused by VA and prescribed Vagifem. The burning is actually caused by nerve pain, not VA. I am now on my tenth consecutive week of anti-biotics, in addition to the five courses that I had prior to seeing the URO/Gynae who is now treating me. Unsurprisingly, I have had a few bouts of thrush during this time and the vulva specialist is truly lovely, the first time I saw her I didn't have thrush but the second time I did have thrush brewing and she phoned me up to let me know and she now has me on a weekly anti-fungal treatment while I am on the anti-biotics. It is just comforting to know that there is nothing sinister going on 'outside'. I had previously taken myself off to the local STD clinic during one of the previous bad attacks of thrush - not my finest hour, turning up on a Monday morning with all the teenagers who had had unprotected sex over the weekend!

Also, the physio that MJ and I see had chronic pelvic pain herself for two years so she knows exactly what it is like and how it messes with our minds! I take great comfort from the fact that she is now 100% better.

[Judith57]

Also, Wanderer agree with all the potions, at the beginning of this year I was taking NOTHING at all. Now I take an anti-biotic 3 times a day, cimetidine twice a day (to help my bladder heal) anti-histamine once a day, HRT and amitriptyline at night, anti-thrush treatment once a week, as well as the pro-biotic and quercetin recommended by the URO/Gynae and physio, I would rattle if you shook me! 

[Hattie]

hope you don't mind me asking -Are you aged 57 Judith as your name implies ? as we all seem to be different ages-  i to went to the STD clinic as the acupuncturist i saw questioned whether i had had herpes - so i went to get tested - felt like a bit of a wally amongst a lot of youngsters but at the clinic they were very efficient.

Wanderer

I think if you were assessed in London you might have more faith in all the pills and potions that you are using than you have at the moment.

Hattie

[Judith57]

Hi Hattie, I was born in 1957 so, coincidentally, I did turn 57 earlier this month. Just when I should be thinking about easing down and enjoying myself my world has shrunk somewhat, could never even consider getting on an aeroplane in this state....

[Hattie]

I am 59 - 60 in a few months- my muscle tightness is mainly on one side but i know how you feel - we haven't planned anything away as we would like to for some time and in your head you so want to.

Pain psychologist has said to me do things in small steps that are manageable and set goals that are manageable - like just a weekend away in a self catering cottage - but i have still not done it. It is a whole new way of thinking which i find hard.
 
It is not the same i know but maybe keep the aeroplane as a goal for when you are better 
Hattie X

[Wanderer]

Thank you once again ladies, I am having to be "babied" through this! I too am nearly 57, must be something about 1957!!

My pelvic pain is slightly different from the bladder issue point of view, as I recently had a cystoscopy to check the bladder health, consultant said all was fine but that the urethra was very, very narrow. He dilated it using the thinnest probe he had. I do get weird sensations down there but the bladder seems ok, although I do have stress incontinence, and have to go immediately! But maybe it is the bladder that is having spasms, or do you think it is the pelvic floor? Ooohh, I am so confused!!

I laughed at your post Judith57, about attending the sexual health clinic. I used to work for the NHS, and part of my job was making appointments for the sexual health clinics in part of the North East, and it was like an avalanche of calls on a Monday morning, mucky devils!!

I will make some contact with the suggested clinicians now you have given me such help, I have already contacted the physio mentioned.

I did see an alternative therapist about irritants, and she said that I had Candida, but that is not recognised by health professionals is it? She said not to have dairy, tea, coffee, many fruits, pop, alcohol etc..... I will try it, but I have lost faith in so many theories, as nothing seems to work! Although, there was a window of 24 hours, when I felt really well, and that was when I took Picolax and fasted for a colonoscopy, which was normal btw, and that was because my stomach was empty! And I did read that over 80% of women with IBS have pelvic floor issues, so who knows.....

Again many thanks.

Wanderer. xxx

[CLKD]

Candida = thrush and this is certainly dealt with by the NHS.  Or have a private chat with a pharmacist.

As for stopping foods, this has to be done carefully and under superivision by a health professional otherwise by stopping everything at once, you won't know which food, if any, is causing problems.  Dairy would probably be the first to stop, speaking with a Nutrisionist recently he recommended it has to be done for 3 months.  Completely.  Keeping a food diary will help jotting down any alterations you notice.  Then that particular food stuff is re-introduced.

As for urine colour .......... oh grubs ready be back later 

[CLKD]

Right - grub down the hatch ;-)

urine colour - the first pee of the day is probably dark, that's OK.  During the day urine should be straw coloured, lighter = one is drinking too much, darker and one needs to increase the amount of fluids taken.  Fluid is from food intake, as well as water, tea, coffee etc..

Fruits have natural sugars which can aggravate thrush symptoms, as can alcohol.  So keeping a food diary plus a week of recipes to follow is 1 way to find out what one might be sensitive too.  Not many people have a true allergy, intolerance can occur at any age …….

I have found that when I eat too much red meat my whole gut system becomes sluggish for several days!

[Maryjane]

The one thing food wise that has stopped dead my bloating is cutting out all wheat and gluten.

Since I have been on these antibs, which I hope I only have another ten days left ( not that I'm counting ) my stomach has never been so good, so explain that one!!

Regards bladder pain UTIs Judith 57 had what seemed obviously a urine infection, but her p sample was clear, I had no signs of a p infection and I had e-coli, the difference being j57s had gone into the bladder wall so urine samples do not pick up those infections, and the problem with nerve damage is where you think it hurts is not necessarily where the problem is, like phantom limb pain. What I thought was one area, a lot of those problems where coming from the bladder. The uro/gynae said pelvic floor pain, generally starts in the bladder, womb or bowel.

Wanderer, there are no guarantees of getting better, but my research suggests we have a good chance with the right multi-disciplinary team, if you have bupa great, if like me you don't then be prepared!!!!

I couldn't do much in the state that I was, however much money we have.

[Judith57]

I just lost a really long post I was writing, will have to try and remember it!

Hattie, the little steps is a very good idea, but I do find that when I do manage to achieve something it makes me somewhat sad as it gives me little glimpses of what my life used to be like before this all started. I also start off feeling very positive and then when I try to do something and can't it brings me crashing down to earth with a bump, just simple things like sitting on the train on the way to work (like normal people  ).

I also find that just the thought of sitting makes everything tense up so there must be something going on psychologically now. I have just been for a walk in Greenwich Park and made myself sit on a bench in the sunshine for ten minutes. As soon as I sat down everything started to tense up but I made myself breathe through it.

Wanderer, I sometimes wonder if the spasms are coming from the bladder or the pelvic floor but I think they are coming from the pelvic floor. The STD clinic I went to was a 'turn up and take a number' type, I had to sit and wait on a little hard chair for over an hour so I kept walking round and round the waiting room as I didn't want to miss my slot!

An overgrowth of candida can cause all kinds of problems in the body apart from vaginal thrush. It can cause bloating, joint pain, asthma, the list is endless. The URO/Gynae that I see has me on a histamine intolerance diet, it is very similar to an anti-candida diet. I am a bit lax and should really follow it more closely, if I knew it would mend me I would follow it to the letter.

About fifteen years ago I had really bad chest pains, loads of tests and nothing found. Eventually, I took myself off to see a homeopath at The Hale Clinic near Regents Park - not sure if it is still there. The man I saw had a machine with some rods in and a probe which he moved over the soles of my feet. He then adjusted the rods in the machine according to the reaction he was getting from the probe - all very weird! Anyway, he gave me a list of foods to avoid, a lot of little white pills and some yellow powder to mix in with orange juice and drink, I think it was an anti-fungal medication. After two to three weeks the chest pains completely went so it does make you wonder!

I think we all need to take ourselves off to a retreat where we can practice mindfulness, have intensive physio and follow a special diet. MJ would keep us on the straight and narrow - she knows more than the experts!

[Hattie]

Judith57

i understand your feeling of sadness - i get it to - because you are still doing things but not in the bodily state that you used to be in and as you have said twice 'i made myself' do ... when normally you would just do it. I started cleaning the bathroom the other day and had to stop and go elsewhere to calm down then go back to it.

The lady i saw through the pain clinic was a pain psychologist - she taught me about Pacing - which i find hard to apply to the pelvic area - maybe different if you had a bad back - Goal Setting - doing what is achievable for you - Relaxation techniques and something that we spent a lot of time on which was the connection between Thoughts, Feelings and Actions that 'run' between each other.

How your thoughts affect your feelings and consequently your actions and vice versa and inbetween.

She also said to use Distraction - like watching TV which takes your mind off pain - as a reward - i can tend to use Distraction too much.

Do you think it would help you to see someone similar through your pain clinic ? or does your CBT cover things ?

Hattie x

[Judith57]

Hi Hattie, the CBT guy that I see is very nice but we usually end up just having a nice chat, which actually cheers me up no end. I have had my five BUPA sessions with him and need to phone them up to ask if I can have more.....the pain specialist who does my nerve blocks recommended a physio under his team at the Pain Management Dept at The National Hospital for Neurology and Neurosurgery. She has given me a huge amount of reading material about Female Pelvic Pain and pacing and rewards. The thing is, she told me to try and wean myself off the donut cushion that I use in the office. She told me ten minutes off, twenty minutes on etc etc. I then got into the office and sat on the chair without my cushion. I find it very diffucult to understand how I sat on that same chair for over twenty years with no problem and now find it so painful. Anyway, I stupidly thought 'if ten minutes is good then let's see how long I can tolerate this' I sat through the pain for three hours until everything was positively 'fizzing' as if I was on an electric chair and now I have ended up causing a whole host of other problems...She also gave me information about setting SMART goals and pacing and rewards but I couldn't really get my head around rewarding myself with a cup of tea and a biscuit if I did a certain activity. I use all my energy going to work and trying to get myself better and, just for that, I reward myself whenever I feel like it, just for hanging in here 

I do try to set myself goals but I am much more careful now to listen to my body. I am trying to sit on the train to and from work, even if it is just for some of the journey but if I am having a flare-up with my pain I avoid sitting as I don't want things to get worse. Going to the local shopping mall on Friday was a huge achievement but also frustrating because things just aren't the 'same'.

I am naturally quite a strong person and have been through some tough times, my husband died from cancer of the bone marrow when I was 49 and my father died eighteen months later, but this bloody pelvic pain has almost brought me to my knees. I think the worst moment was about six weeks ago, during the flare-up after going cold turkey on the cushion,  I actually leant against a building close to Trafalgar Square on my way to the station to get my train home and sobbed uncontrollably like a baby     

To be perfectly honest my best therapy through this has been the help and support of Mary Jane, we have literally written a couple of novel's worth of e-mails back and forth and laughed and cried together. Also, if I look at some of my earlier posts on this site (and MJ's) it reminds me how far we have both come.

So this week I have physio after work on Tuesday and on Wednesday I have the URO/Gynae after work. Just for that I deserve a reward 

I am going to reward myself now with a nice bath 

xxxx