# Managing Endometriosis



## kylecat (Oct 18, 2007)

Hi everyone!

I should probably post this on the endometriosis sub board but thought I'd start off here first as I know several of you single ladies have suffered with this condition in the past.

I am actually asking for advice for my sister who has had this condition for around 10 years. It took ages for her to be diagnosed even though she was in an awful amount of pain and ultimately led to her being unable to conceive. Fortunately she was successful with IVF treatment and now has twins. For a while the endometriosis went away but now her boys are 5, it has come back with a vengance  .

Really, what I am asking is have any of you had success with managing this condition through diet, holistic treatments or any other way? My sister is very upset and in quite a bit of pain at the moment so thought I'd see if any of you ladies could help?  

Thanks in advance
Kylecat xxx


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## lulumead (May 29, 2008)

hi kylecat

My friend at work has very severe endometriosis and she has had a lot of success with nutrition, so much so that she has just left to go and retrain as a dietician and nutrionist!  She runs a support group in London with is linked to the Endometriosis Society so I am sure there are other groups around the country.  She has also had a couple of operations to have some of it removed but she has said that nutrionist has really helped her.
Not sure how helpful this is but its probably worth your sister investigating it.
Lxx


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## kylecat (Oct 18, 2007)

Thankyou very much Lulu for your reply. Its interesting that your friend is using nutrition and diet to manage the condition. I will pass this on to my sister and maybe she could have a look at the endometriosis society website

Thanks again  
kylecat xxx


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## Felix42 (Oct 14, 2007)

Sorry I can't help with any advice Kylecat but hope your sister manages to find something that alleviates it. Sounds like such a horrible painful condition.  

Love & hugs, Felix xx


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## kylecat (Oct 18, 2007)

Thanks Felix - I am worried about her at the moment so fingers crossed she gets some proper treatment soon, 

Kylecat xxx

PS - I just love your scan photo - so clear!!


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## Damelottie (Jul 26, 2005)

Hello Kylecat

I'm hoping so much my endo will be better than before I had A .

Ponstan (aka Trans acid) is something that I just can't do without. No doubt sis has tried it but would recommend she does if not.
With regards to diet etc, my pains are just horrendous if I am even a little bit constipated - which usually happens a little around AF time anyway. I take something called Fibrediet from Holland and Barret. It helps a lot with the pain.

I hope she gets some help soon. Its a truely awful illness


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## kylecat (Oct 18, 2007)

Thanks for your reply LL - I shall certainly mention the drug ponstan to my sister, I'm not sure if she's taken that one before - there have been so many!  

Hope little A is doing well - love his new piccie! 

kylecat xxx


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## Chowy (Apr 12, 2008)

KK will PM you when have 5 mins.  I was diagnosed with severe stage 3 endo and it was touch and go if I would ever have children.

xxx


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## kylecat (Oct 18, 2007)

Thanks Chowy - thats really kind of you.

Hope the operation went well - will post more on bumps and babes thread  

Love Kylecat xxx


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## mierran (Apr 24, 2009)

Hi Kylecat, 
I'm sorry your sister is having such a hard time of it. 
i have severe infiltritive stage 4 endo that I've had all sorts of treatment for. i have pain throughout the month, which worsens and i get cramping and flu-like symptoms during af. I also have problems with bladder and bowel.
I've found a combination of measures that help me

1 I get traditional accupuncture every week. It's expensive, but less so than giving up work

2 I avoid alcohol and wheat, where possible. I'm not religious about it tho, esp the wheat. 

3 I try and eat ideally 7 or 8 portions of fruit and veg a day, esp round AF time, and 5 as an absolute minimum. I also have lactulose I take if I feel a bit constipated.

4 I take paracetemol at the start of my af, whether the real pain has kicked in or not, and keep taking it 4x day , not waiting for the pain to kick in. it doesnt stop the pain, but does dull it a bit but only seems to work if you take it BEFORE you're really sore. if you wait till the cramps start, you're just as well taking smarties. 

5 i accept the fact that I'm in constant pain and cant do the things I used to do. It sounds a bit twee, but the biggest step forward for me was accepting that, while it's not fair , and I'd rather it was different, life is the way it is. I dropped down to 4 days a week at work, taking a big pay cut ( and I wasn't exactly loaded to start with ). I also accept the fact that the pain is there, no measure of painkillers really helps, so I just get on with what I can. 

There are other things that can help with endo too. You dont say if your sister is ttc( I would imagine she has her hands full with twin boys ). If not, has she tried hormonal treatments such as 6 months on prostap ( it pushes you temporarily into the menopause , shrinking the endo ). The mirena coil ( it's impregnated with hormones that act locally on the uterus without the side effects through the body ) and even the birth control pill can be helpful in some women. It is, to a certain extent , a case of trying things to see what works for her, everyone is different. 

I have tried things like a tens machine too. I didnt find it very helpful, but I know it works for some. 
Anyway, good luck for your sister.  

Mierran x x


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## kylecat (Oct 18, 2007)

Hi mierran - a huge thankyou for your post - it was lovely of you to take the time and trouble to reply  . I am so sorry to hear about all your experiences - it can be a really awful condition to have.  

Thanks for all the advice re my sister - I will certainly pass on all the things that you have found helpful. She is not TTC, but just wants to manage the condition better. The info about eating lots of fruit is interesting as that is something she is trying to do too as it can be agony if you are constipated.

I wish you lots of luck on your journey  , 

Thanks again
Kylecat xxx


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