Not wanting to scare anyone but this is my story.......

[Nannyjules]

For years I'd had constant lower abdominal and back pain, also thigh pain. I was told by my GP it was 'probably' IBS. I was never officially diagnosed nor had any tests done.

I also had a fibroid in my uterus and it was noticed every time I had my regular smear test done. It was getting larger each time and when I had my smear in 2009, I was told I had a 'very large fibroid in there'. I asked what I should do about it and was told 'nothing, it should disperse on its own'.

Well the following year I had 3 very painful spells where I was taken to hospital by ambulance. I was told it was probably gastritis.

Eventually I saw another doctor, a lady this time, who noticed I had a large mass in my Abdomen but wasn't sure where it was. Because I'd had so much trouble with my bowel motions, I was referred to a bowel consultant. He sent me for a colonoscopy which I had on 30th Nov 2010. That evening I collapsed and was taken to AAU. They thought it was a perforated bowel so I was admitted and pumped full of antibiotics. After having an X-ray and 3 days of treatment, they sent me to Gynae saying it was a problem there instead.

Gynae did ultrasounds, MRI and CT scans, it was decided the mass was in my uterus. They said I needed a full hysterectomy and within the next two weeks!

I had my surgery 2 wks later. They found that the fibroid had calcified, two Spurs had come off it looking for a blood supply. One was attached to my rectum and bowel and the other my pelvic wall. I also had endometriosis and the wall of my muscle had joined onto my uterus.

Unfortunately, 2 days later I had a haemorrhage, was taken back for surgery, lost 4 units of blood, had a transfusion and ended up in HDU for a short time.

Sorry for the long story but I just wanted to say that, since having all this done, I'm still in pain albeit different pain but I've been trying, along with my long suffering Doctor to find out why and what's wrong? I've since collapsed 4 times in agony and taken to hospital by ambulance. Ive been to gastro, gynae and bowel specialists. No one seems to know nor understand how hard it is to live in pain and there seemingly is no reason for it!?! No one will take the responsibility to do a laparoscopy either. It's been mentioned but dismissed each time. I still struggle to go to the toilet and am on Laxido every day plus I get bloated and have to take Dulcolax every month or so because I still get constipated. My symptoms are very confusing to say the least!

I'm currently under the pain management team at my local hospital. They're trying the abdominal trigger injection on 20th May. I'm not sure what it'll do but I'll try anything now!

Before I was referred there, it felt like no one cared and no one understood that I could be in so much pain. It was getting me down and very depressed. It also left me with a hospital phobia and they are helping me with this but I still shake from head to foot when I have to go there. Crazy eh?

Have any of you ladies had problems like these?

I'm hoping I'm a one off to be honest as I wouldn't wish this on my worst enemy, if I had one. I too tend to put my pain aside when I'm with anyone. Night times seem to be my worst now.

[hannah11]

oh my god that is so horrible! I'm so sorry to hear you've had such horrendous experiences and I really hope you are ok. Sending you lots of love and hugs xoxo

[Nannyjules in reply to hannah11]

Thank you hanarrmatey, I'm just really and truly fed up of having pain. Some days I hurt all over. I'll be okay, just put up with it most of the time. Thank you for the love and hugs, I need those right now. 😊👼 xx

[Lauren-Ash]

Im terrible sorry to hear of what an awful experience you have had. Wishing you well x

[Nannyjules in reply to Lauren-Ash]

Thank you Lauren-Ash, nice to hear people with empathy for a change. 😊👼 x

[Lauren-Ash in reply to Nannyjules]

Yes, sometimes i have felt like the doctors are just viewing their patients as numbers or names on a list. There is so little time and such a stress to get people in and out that they don't give the patient the care that is needed

This isn't helpful for pain relief but i got some wheat bags that you can microwave that smell lovely which have helped me to relax when i am in mild pain. Sometimes i focus so much on the pain and wanting it to go away the smell and warmth of the wheeties really help me.

This may help you it may not but i thought id share

[Nannyjules in reply to Lauren-Ash]

Yes I agree, it's all down to time management and sadly nit patient care.

I actually have wheat bags which I use at night to help me with the pain but thank you anyway. 😊👼

[Nannyjules in reply to Nannyjules]

Oopsie! Not, not nit! Lol

[Jellybutt]

Sorry to hear your story and that you have suffered so much. I wonder if looking at your diet might help. I've had lots of inconclusive bowel investigations over the last 10 years because of lots of severe IBS that sends me running to the loo all the time. I've only just been diagnosed with Endo and now this is likely to be the cause of my problems. Two of my sisters suffer with similar severe IBS (and we are suspecting probably also endometriosis too), the thing is one is like me, and we get severe sharp short-term pain (usually before a bowel movement) which has me doubled over, and the other one suffers terribly with constipation.

We have all been following an elimination diet where you take out everything that makes you bad (for me bloating and diarrhoea) and then reintroduce foods slowly to see if you can tolerate them.

I have cut out dairy, wheat, starch (eg potatoes, pasta, rice etc), all sugar except glucose, fruit, onions, spices, alcohol, chocolate etc etc as I don't seem to be able to tolerate them at all. I now really only eat a small number of vegetables, salad, meat and fish and eggs, plus oils and glucose for calories, this has helped me great deal. I only have a small portion of each thing each day eg one avocado, 1/2 courgette, 1/2 aubergine, portion salad too (although I eat quite a lot of eggs - scrambled for breakfast and pm snack). I am working with a dietitian to help improve the variety (although they don't like me not having a conventional balanced diet I am maintaining my weight and my blood tests don't seem to indicate any major deficiency).

I also can't tolerate alot of medicines and avoid all with lactose, starch or sucrose or sweeteners in. I've found the worse things for bloating are things like onions or onion family, garlic, cabbages, cauliflower. I blow up like a balloon about to burst and feel so uncomfortable - like I am going to pop.

I've found that doctors tend to think they can only fix things by throwing pills at it and really when it comes to food & my bowel it was only by cutting out a lot of things to get to a baseline diet without reactions, and listening to my body, that I have been able to improve things. This takes alot of time.

Also your bowel has had a lot of trauma - physically and with drug treatment (antibiotics disrupt everything too), which takes time to recover from.

Its only an idea but I thought I would share it as it has helped me.

I did suffer from constipation when I was pregnant and then I had a teaspoon of flax seeds in water before every meal to help with that. The seeds give out a kind of slime that helps move things along! After my lap recently I took coconut oil to ease the constipation - another natural laxative - I drank this in hot water with glucose in it - was quite nice actually - this was actually out of desperation after I had googled it in the middle of the night as I was so uncomfortable and I didn't have any prescription laxatives but did have coconut oil. That worked well too. Probably the massive amount of painkillers I had contributed to this (I also reacted badly to them). So maybe some more natural alternatives are a gentler option?

I hope that you get some relief with the support of the pain clinic and its not crazy that you get terrified of hospitals - I guess you have a good idea why!!

Good luck!!!

[Nannyjules in reply to Jellybutt]

Aw, thank you for your kind words, I will take a look at my diet as it may help and I'm all for that!

I'm supposed to be seeing a dietician but nothing has come through as yet.

I do know that lactose has caused me problems in the past and so has wheat. I tend to stick to things that are gluten free where I can so it does sound like my dietary needs may have to be looked at.

Once again, thank you. I do appreciate any suggestions of help. 😊👼

[Jellybutt]

[sal20]

You poor poor girl, that is just such a sad and dreadful story, my heart goes out to you it really does. Despite all the trauma you have been through, you have still come out smiling. Thanks for sharing your story with me/us xx