Pelvic Pain Support Network
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Chronic Pelvic pain

Chronic Pelvic pain

Hi All,This is my first time on this group. I have chronic pain down in my pelvic area,sometimes it shoots into my vagina,and into my anus. Sorry to sound so crude but it's the only way I know how to explain it. Now this starts from morning gradually getting worse until I go to bed. Once I'm asleep it don't wake me up. I've been suffering this now for about 12yrs. I was told it was IBS,to which I never believed because there's no such thing as IBS,it's just a get out of jail card,and I've had a few Dr's agree. Now I believe my pain specialist thinks it's due to nerves,so six mths ago I had a impar ganglion block,which made no difference at all,I am now due a second one which he tells me will work. Now I'm not afraid of having it,but I am afraid of it making things worse. So can anyone tell me if they've had this procedure and what effect it had. I've been reading up on here,and I'm under the impression he thinks it's ,Pudendal Neuralgia. So any advice would be more than welcome.

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Is your Bowel functioning well?

Did you have any investigations for the "IBS" ? Could you have Diverticular?

Do you have any Pelvic Floor weakness?

Is your tummy / abdomen flat and firm or does it ever swell and/or feel lumpy or hard ?

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Hi Mary,My bowel does not function as well as it used to,I now go after each meal,where it used to be once a day. I've had every test available Colonoscopy,Sigmoidoscopy,ct scans MRI,Barrium Enneagram etc etc.All came up negative. My tummy is quite swollen,but that's all the time. I've also been half way round the country seeing different Gastroenterologist,private,or NHS.

Nobody has really gave me a straight answer,I don't think they know.

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Hi Norma, just glanced back at some of your previous posts, not read properly though, not seen all.

Well, we have a lot in common !

I see you have Hypothyroidism, when did you last have your Thyroid bloods test? Do you have Hashimoto's Autoimmune Thyroiditis?

If you haven't been tested for Coeliac Disease then ask GP to arrange asap. Also -have you ever had any nutrients levels tested ? In particular : Vitamin D , Calcium; B12, Folate; and Ferritin.

If not then ask GP to do these also.

Don't spend any more money - see GP.

About the Barium Enema - I was told 'normal' After my first. Actually, it revealed Diverticular. What they meant by "normal" or "negative" is NO cancer !! Much later, a new GP (after moving) told me.

However, there are numerous, benign conditions that we need to know about. So we can do our research and "accommodate" our conditions as best we can with any helpful dietary & exercise adjustments.

You haven't had a Defecating Proctogram? Not very pleasant! I think you would need to be referred to a Colorectal Specialist for this to be ordered and an up to date Barium Enema if last one was years ago.

Are you under a Gynaecologist? Have you ever had an Internal/ Transvaginal Ultrasound scan?

Mine revealed a Fibroid outside of the womb. I always said I thought I had one but they kept doing regular topical pelvic Ultrasound and saying "No fibroids ". Not very nice to find out the day before my 60th Birthday that I have a fibroid above and protruding into my womb causing a concave womb. I could have carried on having miscarriages. Bit late now.

Do you have Pelvic floor weakness? I do.

It's possible that your bowels are quite full and every time you have a meal then things get moved along a little, you go to the loo but have incomplete defecation.

Are you able to exercise at all with all your conditions? Do you go to the pool at all? Try a couple of lengths or few gentle exercises in water?

If you have your recent Thyroid blood tests results, would you be willing to share this?

I didn't get straight answers . Only found out all the conditions I have by applying for copies of my hospital records. I got them free of charge each time I asked because I applied within 40 days of last being seen (under the Data Protection Act ).

Have you been on 100mcg Levothyroxine for a long time. I'm on 75mcg at the moment.

Are you on any prescribed supplements?

I am on Vitamin D and Folic Acid, but only found out last year about deficiencies after I asked for tests since joining Thyroid forum on here.

I, too, am on Lansoprazole. But will only take the Zoton Fastab orodispersible tablets. Had to fight to keep them.

I have numerous conditions !

Looking forward to hearing from you!

x

Mary

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Hi Mary I'll try and answer most of your questions.

I don't have hypothyroidism,and I'm on 100mg of thyroxine a day,have been for some time now. I have had a defecating Proctogram,been tested for coeliac decease,I'm not under a gyno,but I have had ultra sound on my ovaries,and uterus. When I had the Colonoscopy ( never again) they did find one polyp,which they removed. I have the same lansoprazole as you,due to having no gall bladder,which is when my problems began. Also like you I would love to see my medical records from around that time. All my vit D and calcium spot on ,I've just come back from seeing my Osteoperosis nurse and she said spot on.

I don't exercise as much as I should due to Emphysema,and I feel like I'm walking on a balloon all the time,and I had a fall in May and broke my arm.

I am seeing my GP Wednesday about it,for what good they are,I usually avoid seeing them,there isn't a decent GP around by me.

Anyway I hope I've covered everything and I'm very grateful for your interest. I will show you my latest blood tests for my thyroid when I find them.

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Why are you on 100mcg of Thyroxine if you don't have Hypothyroidism?

Did you ever have Thyroid Antibodies tested - TPO and / or Tg?

Did you ever get your results of your Defacating Proctogram? It should have shown if you have a Rectocele.

You could ask for some nutrients levels to be tested as you probably have some deficiencies due to Diverticular causing absorption issues. Ask for:

Vitamin D, Calcium

B12, Folate

and Ferritin.

You may have Faecal retention.

Sorry but I didn't receive notification of this reply and only just found it as I was wondering about your latest post ?

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Hi Mary,to answer your questions,I now know underactive Thyroid is Hypothyroidism so yes that's what I've got.

As for the tests you mentioned I've had them done once,My GP only test the THS,but I did once insist on those tests you mentioned. They came back just a lack of folic acid,which I take daily.

I was told the Defecateing Proctogram was fine showed nothing.

Here are a few of my latest blood results from December.

VitD 66.8 VitD3 60.1. VitD3 6.7

Calcium 2.74. Ferritin 26.1

I'm afraid that's all I have at the moment.

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I am going through something similar. My urologist thinks it’s PN. I have never had any kind of block and am supposed to be getting one in Feb. I have the some fear , not of the injection itself but I don’t want to make things worse. From what I have been reading I think it’s one of those things that for some people it helps , some it does nothing and I think for some it feels worse maybe initially and then gets better. The one thing I do know for sure , is I am tired of all this and really wish I could find a magic pill or something and everything would be “normal”.

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Hi,I can totally see where your coming from. I've had about 10 yrs of this. It's took over my life,we haven't had a life since this began. Reading a little over the week end about PN,I think that's what my pain Specialist has in mind.

Can you tell me,does it affect you during the night after you have got to sleep?

I am really fed up of continuous pain. I've just spent £240 on a food intolerance test,which has come back negative.

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I haven’t had issues when I am asleep , if I do it seems minor.

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Hi Mary, i have had same symptoms as you, but also get severe bladder pain. Started 10yrs ago and i also had every test and procedure available. I had urodynamic testing for my bladder and it showed some pelvic floor dysfunction causing my bladder to spasm and not empty fully. I tried some physio with a pelvic floor specialist, but that only made the vaginal pain worse. Had a cystoscopy to check for I.C., but no inflammation in the bladder. I suffered in pain every day for 12 mths as no pain medication would make any difference. Finally went to Gyno and he tried to do a lap, but all my organs were stuck together with large adhesions and he couldn't do it. His conclusion was that the nerves in my lower pelvis were being crushed by these adhesions that could not be removed. I have had 3 - c sections, a non cancerous tumor removed lower, hysterectomy with massive endometriosis. I was then sent to a pain specialist with all my test results and he concluded it was nerve pain. I was put on a low dose of Endep/Amytiptiline, it's very slow at working so took about 6 weeks to notice a difference in pain relief. Also given valium 2mg 3 times a day when needed. I was ok on the low 10mg dose for a couple of years, then had to go up to 15, then 20mg. I'm currently slowly going up to 25mg as i have developed sciatica which is irritating all the nerves in my pelvis and everything has flared again. Hope you get some help soon.

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