Sorry to hear about your pain.  Sounds very difficult to deal with and frustrating to have no answers.  I'm sure that they have already tested for this but my first thought was that I wonder if it could be endometriosis.  I know it can be difficult to test for (short of looking inside) and certainly can cause a lot of pain.  One tricky thing about endometriosis is that the severity of symptoms don't necessarily correlate with the severity of disease.  Pain is severe if the lesions happen to be on a nerve but the disease may be mild and difficult to diagnose.  Just a thought.

Glad you have an appointment but wish it was sooner.  June sounds like a long time away when you are dealing with that kind of pain.  Hope you get answers and relief soon!

I also had a hysterectomy at 40 for the same reason and that is why I thought of it.  I'm sure your gynecologist knows best.

Glad it works for you to have an appointment sooner.  Hope you get some good answers!

Hi Lisa,

I didn't know it was possible to get varicose veins in that area... you learn something new every day!

Anyway... I found this web page about it...

http://www.sirweb.org/patients/chronic-pelvic-pain/

... but I don't think this is the answer.  My pain is severe and comes in monthly attacks.  It's not "dull and achy" and (sadly) it doesn't go away when I lay down.  I wish it were something this easy though!  I have no desire for any more freak shows.

Heather

Hi Heather

Regards endometriosis , it was suspected in me . My gyno said it can only be diagnosed by a laproscope . If it has resulted in adhesions or collections these can be seen on USS . But even CT misses small endomerosis lesions . I know you trust your gyno and i suspect you don't have anormal consellation of symptoms so she doesn't wish you have an un necessary invasive procedure . I just wanted to say

I have idiopathic angiodeama as my diagnosis . I commenced vestril and my lower abdominal pain is much improved as I had bladder spasms from intersitial cyctitis and womb spasms . With bowel abgiodeama and spasms making my whole situation more difficult . My rectum regularly swells where I feel I need to go but there is nothing .

I have had a gyne and surgical workup and they have drawn a blank . Strong antihistamines are the only thing that has delt with the spasms .

Buscopan worked for me but it interacted with my anti histamines and I slept like a baby . I was recovering from a large shock - CT contrast 7 doses of adrenaline and another 3 weeks later . So my exhaustion may have been due to that .  

I have searing back pain which radiates down my legs and makes my legs shake .  I have had a neurology and rhumatology workup . I have a fibromyalgia diagnosis . But that was very early in all this and my pain and other symptoms have other explainations now . I do fibro things - pacing myself and soaking myself in cool baths .  None of the fibro drugs worked .

I believe this pain is due to lymph nodes being full in my pelvis and pressing on nerves . I get ataxic when walking more than very short distances . From young when i was due on my period my womb would hang low . Now I am like that permently ,

I hope your pain is improving ,

hugs

Josie

Hi Lisa

Thanks for your understanding . Your description is bang on . I was trying to say but kind of didn't .

I know it may not be mast cell but antihistamines are working . So its a maybe

I don't talk a lot about my shocks . It is these that keep me persuing this .
I have flushing bright red burning , sometimes pale .
early warnings - coupe moments and feeling grouchy for no reason .
I then itch ++++++++++++++++++++++++,
swell in areas I dont have my niggling swelling +++++, and more in the areas I do
Vomiting , bowel swelling , cramps and diarrhoea
i get wheezy ,
i get dizzy , jiddery
my heart races , banging out of my chest .
my wheezy is audible from afar ,
my thoat swells inside where i cant get to it increasing to closing
i can't move any air , blue
passed out , unconcious .

A major shock is through the symptoms in 3 minutes max . I epipen these every time . Some niggle then go full , i epi pen these at heart banging phase and avoid unconciousness .

I have passed out 5 times in the early days when I wanted to control this . I learnt . i epi now . In quick ones I need 2 lots of adrenaline all the IV offerings - steriods - hydrocotisone 200mg IV , piriton 10mg IV and ranitidne 40mg IV . I have multiple nebulisers - salbulamol ( albutarol ) . I have also needed IV magnesium to settle the wheeze .

i sometimes have a Bleed from my bottom in ED or my period starts .

My biggest concern is snowballs . Where I react and within days again , a week again etc . I have had 5 of these times .

The first was assoc with major stress . I was living with my sister and she was gambling . i had finally had enough . We argued and her husband hit me . I was homeless . i went to a refuge , a week later after an evening of fish and chips ( I know I had no idea what to avoid at that point ) I had my first throat close . The snowball began then . One shock the next month and then 5 in a month .

I was getting this 3 weekly for a year , weekly in April . I am now on 3 monthly . Spring is an unknown entity , but my meds are helping . the other major factor is trigger avoidance . For me these are foods , sulphites , alcohol , vinigers , infection , hormones , heat , emotional and physical stress , increase in IGE allergies - cats , grass and house dust .

I know it could be angiodeama from any source , but the nature of my itching and swelling suggests histamine

The new antihistamines are really helping and singulair has changed my chest significantly . I know singulair works all all types of angiodeama

My chest xray has been described as not normal ?????????????????? Another question I have posed to the new doctors .

For those who don't know about angiodeama . It can be from 3 broad groups . Autoimmune , kinin - heridatory angiodeama and histamine .
In me autoimmune has been ruled out . HAE type 1 and 2 have been ruled out . Type 3 has no definitive test and the new docs are not wanting to go that way yet . The treatment is traxamic acid , which had been ruled out as I had had heparin and had reacted . traxamic acid has a potential side effect of DVT . I asked the doc reacntly about it . he said the DVT is more theoretical than actual . So it is a possibility .

This leaves histamine as a cause . My tryptase remains normal . 3 .

They want my reactions proved currently . i have requested my 999 call recordings and paperwork . This will resolve this hurdle  As my airway distress is obvious and my oxygen level is low .

I am glad treatments are being offered .

My day to day symptoms are less intense versions of shock .

I have hope in my back pocket i deal with it , don't complain much  even of pain unless its over 5/10 . The meds are helping

many hugs ,
Jose

Hi Lisa ,

Niggling , is for me annoying symptoms which aren't serious - a flush with no other symptoms or a bit of itching and flushing bit not intense itching . Symptoms of histamine release that don't develop - to anything more -  not shock . An extra dose of antihistamines stop them .  I don't know if  I am alone in this .

Please ask anything I say that you don't understand as I do find my humour is lost sometimes .

I fully agree with you I need some other tests I asked the new medical team about prostoglandins and they said no as did DR Grattan . I am hoping the new boss will say yes as a BMB without as positive level feels premature but I amy be that person the American doctors describe on the videos   .So I am a bit stuck as I can't afford the private route here as i am on benifits and disablilty . i have been saving but I now have to move house as my landlord is not allowing the adaptaions I need to use this property xxxxxxxxx

Roll on may 31st and my next appointment

How did I freak you out ? I can be a bit too honest sometimes and direct . i don't always do this . I am more so if I am feeling rough

hugs
Josie

Hi Lisa

Thanks , i will . On medscape I assume ? There take was it won't add anything to my case .

Yeah , I scare myself sometimes with the biggies as I call them . In the moment I am not emotional , except a feeling of doom with really big ones , that hits about a week after if I have been really ill . I DO NOT faff about though i am EPI PEN and hospital .

It is this expereice that makes me pro Epi Pen . It works and it holds me until I have paramedics and hospital . For newer members there are certian conditions which should be excluded which mimic masto / mast cell activation , that are dangerous to use Epi Pens with . I have had those excluded .  All medications have to be considered on a risk / benifit level and fro me the benifits . need for adrenaline ( epi pen ) is larger than the risks but I am aware of the risks and look after myself .

I was very frustrated in the stage that I thought I was avoiding avoiding avoiding and I was still in ED every 3 weeks . I then learnt I wasn't avoiding as well as I could be ( stuff i didn't know ) and i had other triggers .  

many hugs

Josie