www.pelvicpain.org.uk

[Jennifer Harding]

Hi,I'm very new to this site and I was hoping to get some guidance from others who have the same experiences that I do.
I'm 23 and suffer from Symphysis Pubis Dysfunction which I was diagnosed with while I was pregnant with my third child and IBS which I was diagnosed with about 2 years before this.
I'm a very busy stay at home mum and don't get much time to go to the doctor. I have been given all sorts of meds in the past but none have really worked. I have heard that antidepressants can help but I'm not sure I want to try this.
The SPD can get very bad, especially when the IBS flares up and the swelling puts extra pressure on my pubis. The pain can be so bad at times I just want to cry out or curl up and go to sleep. I don't feel anyone else understands. I would just like some ideas to help me get back to some normality.
HELP!!!!

[Budgie]

Hi Jennifer and welcome to the site.

I'm not familiar with the condition but when you say antidepressants may help, do you mean in low doses? Many antidepressants have a pain killing effect in low doses. Even if they are at normal doses, they are much better these days but seem to still carry a stigma. I'd try them if I were you, just to see if they work. If they do, fine but if not stop and try something else.

I'm sure you're aware but there is a British SPD Support Group (which I just googled). They say that the best treatment is either by an obstetric physiotherapist, chiropractor or osteopath. All worth investigating if you are in a lot of pain.

Don't know if that's any help. Good luck!

Neil

[judyb]

Hi Jennifer,

How do you cope with 3 young children and severe pain - is it all the time or do you get some breaks from the pain ? How would you judge the pain level on a scale of 0-10 ?

Have you tried physiotherapy or any physical therapies ?

When you say antidepressants have neen mentioned - is this amitriptyline ?

Judy

[Jennifer Harding]

Thanks everyone for getting back to me.

I will google the SPD website and have a look. I am not sure about the anti depressants especially names.

The pain is pretty bad at times. It's always there. Most days perhaps (on a scale of 1-10) 1 or 2 but it does flare up for all the usual reasons, cold weather, overexertion, etc. and sometimes just for fun!!!!

When it does flare up it can be anything from 5 upwards depending on whats effected it. How do I cope? I have no idea, all I can say is that I can't actually remember a time when it didn't hurt although I know it wasn't long ago!!! I have just got used to it and know I can't curl up on the couch or sleep without a pillow between my legs, wear high-heels (or get through a period without plenty of pain relief)

If it gets really bad I call the doctor and he gives me anti-inflammatory pills, codeine and some other really weird stuff with long names! And hey, I still have my crutches. I would just rather take one pill every day and not get the pain as bad then wait for it to get as bad as it does before taking a complete cocktail. The annoying thing is anyone I have met who has had SPD has found it has gone within the first year after giving birth. I just can't seem to shift it!! My doctor says that there is no cure, which of course there isn't but how many of you would have your left arm cut off with a rusty nail just to get your hands on a pill that would stop it all????

[Jennifer Harding]

Also there is a really annoying side effect of pins and needles for no reason. Also I think I have already said that the IBS triggers it, but both me and my partner are absolutely flabberghasted as to what actually sets off the IBS. Journals, tests, relaxation techniques we've tried them all!!! I think it's just a vicious cycle

[judyb]

Jennifer,

When you mentioned bad periods - have you had this for a long tiime ?

Has anyone mentioned endometriosis ? there is info about this on the website and can be misdiagnosed as IBS.

http://www.pelvicpain.org.uk/pi-g-endometriosis.php

Judy

[Jennifer Harding]

Hi

I have had trouble with my periods as I have an contraceptive implant fitted and it causes lots of problems. I see my doctor regularly about it as I became pregnant on the pill twice this is my only option. The only other thing I can have is the coil and it will cause the same problems. He has said that I can consider being sterilised but at 23 I don't want that, although becoming pregnant could cause me to be in a wheelchair due to the SPD.

The periods exacerbates the IBS, which in turn irritates the SPD. I had a termination not long after having my youngest which was so awful, but I wouldn't be able to carry a baby full term without being in terrible pain and needing a wheelchair and we decided that caring for the three children I already had was more important and being in such pain wouldn't allow that.

I take tranexamic acid to control the periods it controls the bleeding. But there is nothing else they can give me. Along with the anti-inflammatories, anti sickness tablets (I get awful nausea with the IBS), IBS relief tablets and painkillers, there is not much more the doctor can give me.

[Jennifer Harding]

I have just looked at the link you gave me for endometriosis and will definitely speak to my doctor about it. The symptoms are very much like what I get. I was diagnosed with IBS after having 2 ultrasounds and blood tests. (my uncle has chron's disease and they needed to rule this out.) But my partner and I both agree having looked IBS up on the internet that although I get nausea, sickness, headaches, stomach pain and extreme tiredness that I certainly am not running to the loo. In fact I don't have many problems in that area at all, but I just accepted that they are just symptoms and perhaps not everyone gets these. But I can tick almost everyone of the symptoms on the page I just looked at. Thank you so much, perhaps this will finally get things sorted!!!

[ClareO27]

Hi, I was diagnosed with severe IBS 6 years ago. After trying most antispasmodics and painkillers and following recommended foods like wheat and fibre the thing that worked most was my GP referring me to a dietician. She set me up with a diet that basically retrains your bowel muscles to start working again, a bit like gentle exercise for the bowels. The main pointer of it was switching high wheat and fibre products for oat based products as they are gentler on the bowel but do the same job. Good idea to make a daily food diary with level of pain/symptoms each day to take to the dietician with you and also helps you narrow down possible foods or food groups to avoid in the future.
_________________
Clare x

[judyb]

Clare,

This supports what the NICE guidance for IBS says. There is a summary of the recommendations on the bowel page of this website. Also the nutrition guidelines the managing pain - lifestyle page.

Thanks for posting your thoughts on this. Are you symptom free all the time ?

Judy

[ClareO27]

Hi Judy, there are so many lines of advice for coping with IBS with the main one being a healthy diet of wheat, high fibre and fruit and veg. If I followed this diet I would not be able to move from my bed so sourced further advice from a dietician and was explained about retraining the bowel muscle and alternatives to try. This was a god send although I am not pain free all the time.

I am still coming across foods that kick start IBS and add them to the lists of foods to avoid, none of which I miss in the slightest, avoiding certain foods become second nature.

Infact I found another food to avoid today (gravy from KFC) but did notice that this IBS attack was very short lived in comparision to how it used to be, lasting perhaps an hour or so compared to weeks!

Stress definitely plays a key role in how my IBS is, I can actually feel it kickstarting when I am becoming stressed. At this stage I think of where the nearest toilet is and then I look at the situation and break it down, put it in proportion and deal with it. I've probably developed a new skill in coping in stressful situations

Movements are still irregular, a mix of loose and constipation even within minutes of each other . But this is managable when the pain is managable and it is not interfering with life!

I also find that my IBS is worse during periods and well what could be endometriosis. I find the pain doesnt last long tho and is usually an indication I need to go to the loo (hope I'm not going to far with the info )

I have added a topic in the Endomtriosis pages, Diagnosis2 I think I called it, Now I feel I am on top of IBS I still have other pain that could possible be Endometriosis.
_________________
Clare x

[fibropain]

I have had IBS for over 24 years, and changed my diet to suit, instead of taking tablets, as they didnt help.

I am lactose and protein intolerate. I take Loperomide each time I have a 'bad' day, basically diarohea all the time.

I stay in the bathroom, for hours, (as you cannot hold what isnt in your hand). I take a good book, the radio or Ipod, hot water bottle, bottle of water, blanket for your legs as it can get cold in there, the phone as it will ring just as you get on the toilet !

I have joined the Gut Trust (used to be IBSnetwork), and they give you a card that has "I Cant wait" on it, and it is great for the need to use toilet urgently.

www.ibsnetwork.org

it would be good to speak to others that have IBS, my neice who is 24 has just been diagnosed with IBS, but she has the constipation format.

xxxx gentle hugs to all.
_________________
smile - it is a great exercise

[judyb]

It sounds as though yours really is IBS , however a lot of young patients are diagnosed with IBS which turns out to be Endometriosis.

There are also several research papers that have been published on this now.

Does your niece have painful periods ?

Judy