www.pelvicpain.org.uk

[SueB]

I’ve finally decided to ‘sign up’ after watching this site for almost two years and finding it very informative. I am 59. I have been down the same, long route that most of you have been down trying to get a diagnosis for your symptoms so I won’t bore you with my full story. From my own circumstances I have feared I am heading for PNE for almost two years. Of course, I’ve been on my own with this and had to do my own research as my GP has no idea. There is no doubt in my mind that I now have this and am seeing Dr Baranowski on 16th March. I will be quite truthful here and say that all this time I have feared the worst I considered that I would rather die than have to suffer this awful condition. I feel ashamed saying this because there are a number of very brave people affected who still manage to have some fulfilment to their lives. However, from everything I’ve read I can’t see that there’s much hope – how I wish that some of you could tell me differently! I am absolutely at rock bottom. I can’t think or talk about anything else, cry all the time – am driving my family nuts I’m sure but they are very supportive. Now simply can’t get comfortable sitting, or laying for that matter as my latest and most telling symptom is cold sensation in left buttock with pain/tenderness from centre buttock to rectum/anus which feels tight on left side. All the ‘compensating’ that goes on over time in your lower back due to tight pelvic floor muscles etc also means back-ache into the bargain, not to mention depression, total withdrawal from social engagements etc. I must add that I’ve been on 30mg Duloxetine per day for over a year which has helped, but is not sufficient now. From last night I have taken it upon myself to increase to 60mg which is the more usual dose. I would like to ask one question. I’ve read that the sooner you get a diagnosis the better in terms of treatment, yet I’ve also read that surgery is done only as a last resort. Also, the success rate for decompression surgery is not brilliant possibly due to the fact that it often takes so long for people to be diagnosed. I am confused! This is all very long and I’m not sure I’ve put down the important things (there’s plenty more I could say). If anyone can offer some words of comfort or wants me to elaborate on my own situation, I will be happy to do so. Many thanks to everyone involved with this support group.
SueB

[lin]

Hello Sue,

welcome to the forum. I also remember watching the various posts for quite a long time before deciding to take the plunge to introduce myself. Somehow it seemed quite a scarey step to take, I knew I wasn't coping but at the beginning, to see my thoughts in writing, reinforced my fears about having this dreadful condition. I was so afraid after reading the accounts of others, I just didn't want to believe that I might be going down the same road.

However, the website has been a life saver, and the forum has given me so much information and support.

Sue, have you had a definate diagnosis? You mentioned that you are taking Duloxetine, have you had any nerve blocks done? Also were you referred to Dr Baranowski by your GP?

I'm very sorry that you are feeling so low at the moment, I expect most people on this forum feel for you because they will know exactly what you are going through. Your description of how you are is very much like several of my diary entries. I had nerve decompression surgery last year, I wish I could say that I'm cured but I'm not. However, I'm a million miles away from how I used to feel. I think there are lots of reasons for this - firstly, I did my research like you and tried to access everything possible, hopefully your GP/pain consultant has backed you by referring you by referring you to DR B. Have you also had any physio or received any input by a clinical pschologist? Supportive family and friends are really important. Like you, I had stopped socialising and this had a terrible effect on my relationship with my husband, it was a dark time and the future looked bleak. We had always loved travelling and had all sorts of plans once our two children were out of higher education and independent. Our fifties were to be 'our' time before we needed to get involved with caring for parents or grandchildren. But, I felt I would never be able to travel anywhere or sit and enjoy a restaurant meal as sitting was so difficult.

The other really important step for me has been acceptance - this happened without me realising it. Life has got better because I have adapted. I've learned to manage the pain better and I acknowledge I have limitations. I'm now less embarrassed to stand when I have to and I am very proficient at checking out the seating when going out now (sofas & benches). So yes, holidays and meals out are back on the agenda!

Please don't despair Sue, there will be others on this site that will offer support. I really hope you have a beneficial appointment with Dr B.

Best Wishes

Lin

[SueB]

Hello Lin
Thank you so much for your prompt and kind reply – it lifted my spirits no end. I really admire your coping strategies, especially as you must have been hoping for a better result from your surgery – what a disappointment that must have been.

To answer your questions, no I haven’t had a definite diagnosis yet – hence my visit to Dr B – so no nerve blocks yet. I’ve had pelvic pain for two years now but my GP still has no further clue about PN although I’ve been talking to her about it for most of that time. I’ve had to be the driving force with all of this, doing my own research, telling her who I want referring to etc. So, no she didn’t refer me to Dr B, I think I came across his name on this and other PN websites. The Duloxetine was actually prescribed to me in August 2008 by a psychiatrist, who my GP had asked me to see as I was seriously depressed with it all. Luckily, this medication dealt with both the depression and the pain! However, as explained in my post, things have been much worse lately and 30mg just wasn’t enough. I increased it to 60mg last Wednesday and I am pleased to say that I think it has now started to take effect as my pain is much reduced today and my mood is much better. This is in complete contrast to Thursday night. Normally, sleeping is the one escape from everything but I went to bed in pain which turned into the worst I’ve had – it was torture and I was pretty frightened. I couldn’t lay any way at all, not on my back, front or either side. I even knelt on the floor and hung over the bed trying to get relief. I took a couple of strong co-codomol tablets which, mercifully, eventually eased things. Yesterday I took co-codomol every few hours to get through, which isn’t the answer I know, but I don’t have anything else apart from the Duloxetine at the moment. I am expecting Dr B will advise re. medication. Anyway, as I said, today seems much better with the increased dose so fingers crossed.

I totally agree with you about other support – psychologist, physio etc. not to mention family and friends, and I am very lucky in this respect. I will ask my GP about physio – I presume you mean normal physio, not specialist pelvic physio as there seem to be hardly any of these in this country. I am keen to take care of my lower back which I’m sure has been compromised already – I’m always getting twinges in my sacro-iliac joint area which worries me somewhat. I've been having massage (as a treat) over the past two years and last time she did a deep tissue massage concentrated on the sacral area which was very nice and I think I will keep this up as it will help keep the muscles in good shape.

I also agree with you about acceptance, the hardest thing of all but essential for getting on with the rest of your life.

Once again, thank you very much for your lovely supportive reply Lin, I really did appreciate it. Perhaps I will post on here again when I’ve been to Dr B.

With best wishes.
SueB

[Donna]

Hi Sue

I have been reading your post and it brought back so many terrible memories for me. I woke up one morning absolutely fine and getting on with my day. I went food shopping and all of a sudden I had this terrible pain down below. Stabbing, Burning, Acid Feeling and it felt like I had a tennis ball stuck inside me ! I just couldn’t understand it. I went to my GP with my husband and he sent me down to the GUM unit thinking I had an STD ! I knew that was impossible and if I did I would of contacted it over 20 years ago ! They did every test possible and it all came back negative and the Doctors told me I had thrush and this was causing all this excruciating pain I went to my GP at least twice a week for a year as I couldn’t stop crying and I was beginning to get referred pain all over my body. I was in such a state that I thought dying was better than living like this. I didn’t see a future and I felt like no one in the medical profession believed me. It’s a very long story and one day I will put it all down on paper and post it on the forum. After seeing many Doctors in the UK and not getting anywhere and doing a lot of research myself I diagnosed myself with PNE due to the symptoms. I went to Nantes and had the nerve blocks which gave me relief. The Doctors believed I had PNE and decided to operate. For me it was the best decision I have ever made in my life. I had the surgery in the July 2007 and it’s only now that I am on my way to leading a normal life. The operation is not a cure and very few people have a full recovery and it’s also a very slow process. I remember after a year people saying to me “Oh the surgery didn’t work then” as I was still in pain. It’s now 2 ½ years since the surgery, I am still in pain and get flare ups but I am 60% better compared to what I was. I work full time, travel, go on long walks and I feel I have a great future ahead of me. Even if I don’t get any more pain relief from now on I feel the surgery was a great success for me. I hope you get answers soon and your appt with Dr B goes well. Sue,if you ever want a chat I will give you my phone number.

Donna

[lin]

Hello Donna,

I know you were writing back to Sue but I just wanted to say that although I still experience quite a bit of pain almost 1 year post op, I have absolutely no regrets that I went ahead with the surgery. I am no worse and the 6 months prior to the op, my symptoms were just steadily increasing. Now, I am relieved that is no longer the case.

Your post has given me such a lift to know that you are still noticing improvement 2 1/2 years on. I am so pleased for you and you have given me new hope. How long can you tolerate sitting now compared with how you were before your operation? Also, do you still have check-ups or treatment in Nantes?

Thanks Donna.

Lin

[lin]

Hello Sue,

I just wanted to let you know that I have been taking Duloxetine for several months now. I started on 30mg daily - didn't really notice much improvement but definately the pain is better for half of the day since I've been on 60mg. I couldn't get on with Gabapentin or Pregabalin.

I hope you are still feeling a little better since you adjusted your meds, when is your appointment with Dr Baranowski?

Best wishes

Lin

[SueB]

Hello Donna

Thank you very much for your reply. It was good to hear something positive and I am so pleased that you are progressing well, despite the long journey. How long was it for you from the onset of symptoms until your operation? Isn't it awful the way we have to take matters into our own hands and I wonder where we all would be without the Internet. I was amazed at how similar your story was to mine regarding your GP etc., including going to the GUM Clinic!! Never visualised myself doing that, did you? I am struggling on until next Tuesday when I see Dr Baranowski. I know I have something significant going on and just hope he will be able to help me. Meawhile the increased medication has helped a good deal but my biggest problem is that I simply cannot sit or lay comfortably to relax. I cannot tolerate any friction on my lower back or left buttock. All the wriggling and squirming in a lop-sided manner causes me to have awful back-ache as well. I have an assortment of foam rubber, rings etc. and yesterday bought a bean bag which has been the best thing so far as I can squash it about as I like. With the dulling effect of the medication on my buttock I feel I could probably sit normally a bit more, but am cautious of aggravating matters. What do you others do - just grin and bear it when necessary? I will have to do this next week when I go to London as it is an hour each way on the train and I can't face standing all the way.

Thank you again Donna for your support, especially the offer of your phone number. It's so kind of you to think of others even though you are on the road to recovery yourself.

Best wishes
Sue

[SueB]

Hello Lin

Thanks for your comments about Duloxetine. I think this is quite widely used these days as there are a few references to it on the forum. As I mentioned, the help with pain has already taken effect but I think the effect on depression takes a little longer. I am hoping to benefit from that too as I am still totally overwhelmed with everything, very tearful and not wanting to do anything or go anywhere much. I'm not suffering too much with side-effects, just one or two minor things, the worst of which is the big, bloated abdomen! I do worry a bit about the long term effects of medication, but what choice do we have - it's that or the pain.

I'm off to London next Tuesday and will post again afterwards.

Many thanks for your continued support.
Best wishes.
Sue

[SueB]

Further to my previous posts, I had my appointment with Dr Baranowski this week He has diagnosed pelvic floor muscle tension with associated nerve irritation. This was my own thinking back in 2008. My symptoms originally started in February of that year with a minor vaginal problem which my GP put down to hormonal imbalance (10 years post menopause). Soon after I started with low abdominal pain then vaginal/perineal/coccyx pain. Dr Baranowski feels that the pain is fuelled by my anxiety, depression, catastrophic thinking etc. (yes, due to the worry of what it might be!) He has advised seeing a pain management psychologist for (CBT). Another option is some sessions with Renzo Molinari (who has already been mentioned on this site). Dr B is reluctant to do nerve blocks yet as he thinks this will stir matters up and I won’t cope but when I have “better control of my emotional response to my pain” he will consider PN nerve blocks. When I described my most recent symptom of the buttock pain extending into the anus which I felt was a nerve he suggested it could be muscular and mentioned the piriformis. He also confirmed on an anatomical illustration that the route of my pain was in fact the pudendal nerve. I have since googled piriformis syndrome and seen a couple of references to it sometimes irritating the p.nerve. It more usually affects the sciatic nerve but I don’t have that.

My current position is that the increased Duloxetine to 60mg has now taken effect and, thank goodness, has pretty much eradicated the general pelvic pain. It has also dulled the buttock pain a good degree so I am not suffering too much as long as I stay upright! So, I am still keeping my sitting to a minimum, using cushions etc., as I don’t want to aggravate matters.

So, what to do now? It seems I can’t get any further with Dr B unless I have some sessions with the psychologist. Regarding Renzo Molinari, I’m told that although he is an osteopath he also does internal physio/ trigger point therapy etc. I wonder how effective this would be (a) at all and (b) at, say, once a fortnight due to him being in London? I’m not sure what else I can do so my inclination at the moment is to do nothing but to try and get on with my life as best I can. Early diagnosis is encouraged but everything seems such a struggle. I will continue looking at this website regularly as I have found it very helpful and I am so pleased to be a member of the forum.

Please could someone tell me whether nerve ‘irritation’ is the same as ‘entrapment’? I would also welcome any other comments or advice that anyone can offer.

Many thanks – sorry it’s long!
SueB

[judyb]

Hi Sue,

I've sent you a pm

Judy

[bouncyball]

Hello Sue
following your suggestions and instructions I have read all your posts and replies...It's amazing how much I can identify with your symptoms but how differently we are being medically treated...The swollen abdomen (I wish there was a tick symbol on the key board) that's a good point ..why isn't there? so what I mention has an invisible tick....depression big time...after ten mins out of bed I feel something like a golf ball drop into the vagina...it can't be seen and I 've had so many internals by so many people I think even the hospital porter joined the que/only joking... .Gravity is my enemy...sitting comes second and because of my L4 and L5 lumber problems lying causes entrapment of nerve and sciatica comes with vengence.Social life has been cancelled ..people have stopped inviting now...I missed my son's 40th party ..just couldn't go out at 9pm I was taking garpapentin (a drug that stops nerve pain messages getting to the brain (clever aye?) but that stopped working after two weeks...oh boy so disoriantated was I ...couldnt drive-- speech slurred but who cared the pain had gone...alas not for long despite the increase this drug requires. I have been from pillar to post and back again, the bulge at top of vagina is so so painful and pulls nerves and there is swelling on right side I can feel it swell and swell..the worry of something bursting is sending me almost insane so I pop another diazapam then I dont care but I cant do anything normal either.!!I met my partner 6 yrs ago when our puppies fell in love (long story) the first time in my life no money wotrries and such a good man ... we went on four holidays every year..wow life was really getting better...took diving course and certifiate in maldives and all that has changed now... a lot of money has been spent on specialists /consultants/ scans etc...I to was sent to pysciatrist...that is what they do (the gp) its a way of saying we don't know what is wrong with you...in my case all scans including mri showed no explaination of my suffering sore bulged vagina.I used to describe my pain in terms of baby elephants kicking my abdomen as it felt internally bruised and then I was told by someone who has been a great help to me on the bladder bowel site to use a scale of 1 to 10. That was more understood by medical people.This all started two years ago when I got out of bath to put on my bowling gear ,yes , me bowling...my back gave way and I had pains like bad period...(I was 61 on sat sue)... the pain started at the back of the clitoris inside and the clitoris sunk in!! I could list the medication but it would be a long list and despite all pain control and stuff going into my body and playing havoc with my mind nothing takes away the pain except lying down...big house big garden two lively dogs (still in love) it isn't easy to just stay in bed all day although I don't/can't do as much as would like/need to do so I get tearfull and am so depressed..Where I am now is waiting for another mri that I begged and begged for...epidurals are planned for May and in the meantime I have no gp because he can do nothing more for me.Question time...does any one have bulge in vagina? swelling on right side? what is nantes and who else has seen dr. Baranowski? he can't be a surgeon because he isn't Mr. so who else is top in this area of medicine? oh! I forgot I also get sharpe needlelike stabbing pains across my abdomen that sometimes renders me to floor ...pretty embarrassing when you pull down a row of mens shirts in supermarket still could have been worse I might have been in the egg aisle...thanks for listening and hope everyone has a good day the sun might help us feel better. love from bouncyball xx