Pelvic Pain Support Network
10,308 members3,229 posts

Really worried

Really worried

Hi All,I would just like to tell you a bit about myself,to see if anyone can identify with me. 10-12yrs ago I began with stomach discomfort. I was told after a scan it was probably due to a lot of gall stones,so I had them removed. Well things then started to escalate from then on. I had bouts of diarrhoea then constipation ,well to cut a long story short,all that's settled down. But now I have a BM after every meal,each time pelvic Pain getting worse,so by after my tea I'm in a great deal of pain. It's all in my pelvic area,and it's constantly moving. Stress does make it worse. But when I'm standing,or sleeping I'm fine. Now before anyone asks what tests I've had,I think I must have had them all. Also I've been all over the UK,seeing different Gastroenterologist. Right now I'm under one in Manchester which I'm told is the best in the country. I've had a food intolerance test which came up borderline yeast.

I've got a Pain specialist same again in Manchester,who gave me a ganglion block 6mths ago,and told me I really need two 6mths apart so now due. And because of that I get the feeling he feels it's PN. But the pain I'm in by just after tea,is really difficult to live with. In fact I would say it's A&E pain,the only reason I don't go is I know they can't do nothing but give me morphine,and I'm back in the same situation next day. It reduces me to tears now,because I'm soooo sick of being in pain.

I know a lot of you folks are in the same position and my heart goes out to you. But could anyone tell me if I'm going down the right track for PN. I find it hard to understand,how I can sleep and the pain goes,but the minute I open my eyes it's back.

Any help at all,would be appreciated.

26 Replies
oldestnewest

Sorry that I can't read all of this now, I'm afraid I don't know enough to comment on PN anyway.

Could I ask you something though?

Your profile says that you have an Underactive Thyroid - but you answered me on your last post that you don't ??

Just a little confused.

xx🐥

ps

I didn't know about your last reply till now. When are you due your next Thyroid Function blood tests?

Reply

Hi Mary,I'm sorry if I confused you,not my intention.

I'm not that good at understanding the Thyroid. But I know I have an underactive Thyroid to which I take 100mg of Levothyroxine . You asked did I have Hypothyroidism to which I replied no. Now if Hypothyroidism is an underactive Thyroid ,I don't know.Because like I say I don't understand it. I think I last had a Thyroid test not to long ago,I'm not sure.

1 like
Reply

Hypothyroidism is an underactive thyroid. Have you been investigated for prolapse issues ?

Reply

Thank you,like I say I find it hard to understand the thyroid.

Yes I have been investigated for a prolapse,like I say I think I've had the lot,when it comes to tests.

Reply

No need to apologise? I'm sorry for mentioning it!

I recall you said you would post your last Thyroid blood tests results when you find them. Also you had some confusion from doctors a while back - they diagnosed Hypoparathyroidism? ? But said OK since?? I'm not sure about that one.

Yes Hypothyroidism is Underactive Thyroid and Hyperthyroidism is Overactive Thyroid. Hypotension is low blood pressure , Hypertension - high blood pressure and so on.

xXx

Reply

Actually Mary I'm going to ask for my thyroid bloods to be repeated. And yes they did diagnose Hypoparathyroidism ,and I'm as much in the dark as you. Tell me why you would be unsure about that.

1 like
Reply

I've just got no personal experience and I'm not medically qualified. I did look it up a few times. Think you have to have blood tests - Calcium , Phosphorus? ? Can't remember the other. Would have to look it up again.

Reply

ps

About Thyroid blood tests - I only have annual TSH tested by GP now and last one was in April (I think). When I see Endo I am going to say I want tests in winter .

Are you only having annual test now?

Reply

Yes but my GP asks for them and I can't remember my last one.

Maybe I never asked for a copy,like I usually do. So if I ask they will tell me when my last bloods were done.

1 like
Reply

Hi

I have pain in groinal stomach area and it happens after i eat actually it got so bad i did end up in a&e crippled over in pain.

I had intolerance test it came back dairy, yeast and gluten ( not ceoliac but still intolerant ) since i gave it up im not so bad but i still have nerve pain in that area, so i saw a gynaecologist who found a enterocele which he thinks happened coz of all the stomach issues goin from constipation to goin all time and basically i have a minor prolapse and this minor prolapse gives me so much pain it drives me made it hurts when i need to poop and when im in bed nothing but we soon as i get up it there.... i been seeing a womens health specialist and she is helping me and i have to do all me pelvic floor relaxation and strengthening and it is getting better but pn pain from what i gather never goes, i have a friend whose a cyclist and he has it and it is all the time nothing stops it.... whereas as u said ur goes at night... so it something that hurt u when u move!

Plus id say u need to give up yeast and anything else u think may start belly off

Reply

Hi thanks for your reply. I am going to give up yeast.

If I'm sitting ,it's very painful,standing not to bad. But if I sleep wherever bed chair sofa,it goes,then as I open my eyes not move just open my eyes it starts up again.

I know it makes no sense,but that's the way it is.

1 like
Reply

It a weird one i have so many issue that sometimes i dont know what mine is as i have ibs,intolerances, endometriosis and a prolapse so sometimes il b in pain in that left groin and i have no idea

Why.

I do think it the prolapse as it feels muscular as like u it goes when i lay still? Which cannot b anything else as it wouldnt go!

Reply

Like you lulu,I have quite a few health issues,and sometimes ,I don't know what can be causing what.

I do have a feeling my pelvic pain could be due to nerves,because as I say when I'm asleep it's not a problem. I take Diazapam occasionally to stop me from getting anxious. But I think if it was serious I would have pain at anytime.

That's not to say it really gets me down. I think if you can have a name put to why you have pain it's easier to cope with,because you would know how to treat it.

1 like
Reply

Yes, knowledge is everything - then we can do our own research and decide how best to 'accommodate ' our conditions.

Whereas Googling symptoms is risky! ♡

Reply

Yeh i know what u mean i have been in pain with it now for a year and because i have ibs and prolspse( enterocele) endo i never know what is playing me up that day but if it goes at night i was told by specialist it not serious it prob muscular as it only time ur muscle are fully relaxed when ur asleep.

If it was pn nerve i dont think that ever quits? Not sure though.

I have pain in groin and vagina all day but then as soon as i lay down and b still it goes but as soon as i engage stomach muscles it starts?

Reply

Lulu,PN pain does go away when you sleep,which is one of the most definite symptoms I've got.

Reply

Really ?

I didnt know that! I could have that then instead of pelvic floor pain

Reply

I don't know where you come from Lulu,but if your from the UK,I can tell you where to check.

Reply

Yes im from

Uk

Reply

It definitely sounds like PN! The sitting is the worst! I’m going for a PN nerve block. This is necessary to be sure that I have PN. After a few nerve blocks, i’m Going to a spine clinic in Florida where they do a procedure called PN Decompression surgery. I hope this helps! I’ll keep everyone updated. The pain is real!!! I wish you the best of luck!! XO

1 like
Reply

Hi JannyLob,thank you for your reply.

I was told two nerve blocks ( ganglion). The first would give him some idea ready for the second. Which is about due. But I don't really know if the first one has made it worse,or I just feel worse.

Good luck with your health,and yes do keep us updated.

Reply

Gemini71, i’m Worried that I might feel worse! I hope not but I’m willing to try anything at this point. I’ll keep you posted & i’ll keep praying for all of us!!! XO

Reply

That's a chance we all have to take,when having any procedure. But I sure understand your desperation.

Just do all your homework first,and I genuinely hope it works for you. GOOD LUCK.

Reply

Ty!!! I’m on the homework!! XO

Reply

I would be most interested to know your results as I also live in Florida and I have been suffering with PN for 3 years!

Reply

I will definitely let you know!! It’s awful living this way!:(. XO

Reply

You may also like...