# Endometriosis



## Mairi (May 23, 2005)

I have just been diagnosed with 'severe' endometriosis having done 2 IVF cycles earlier this year. I can't help wondering why it wasn't picked up sooner and we may have either not tried or the treatment may have been different. We had IVF, well ICSI actually because DH has a low sperm count but now it looks like I may have been a major factor too.

Does anyone know about this disease? Any ideas what I could do to get healthy again? I have bought a book and see my consultant again in Jan.....

Thanks - I'm in this forum because we have decided not to do any more cycles so I find I can relate to you ladies better than in other areas.

Mairi


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## Martha Moo (Jan 30, 2004)

Hiya Mairi

SOrry to hear that u have the diagnosis of endometriosis 
I have severe endometriosis also and so can identify with you

Have u been seen by an endo specialist to see if they can remove some to improve your fertility??

We do have an endometriosis forum within this site

I will leave the link for you

If it would help to chat please feel free to IM me honey
thinking of u
Emilyxx

Endometriosis board

www.fertilityfriends.co.uk/forum/index.php/board,9.0.html

Also heres a link to a thread where we endo girlies have a chit chat

www.fertilityfriends.co.uk/forum/index.php/topic,42559.0.html


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## Bangle21 (Dec 17, 2004)

Hi Mairi

Sorry about your recent shock.

I too have endometreosis and although mine is minor, I have not had any success with tx either.  There is an abundance of info on the net.  

The main things coming across with the disease is that no-one knows EXACTLY what causes it.  They only know that there is a LINK between endo and infertility.  It seems that it's not the ENDO that actually CAUSES the infertility directly.  It's perhaps the malfunction that's causing the endo, that's also causing the infertility if you know what I mean.

I went to a herbalist and he prescribed me Agnus Castus which regulates hormones, and drops called Endobrit to help with the endo.  He also advised me to cut out wheat and dairy, as there seems to be a link between wheat and endo.  (VERY hard as wheat is in everything but trying as hard as I can!!)  The first month I cut out wheat, my period was alot less painful.  Not sure yet if this was coincidence or not.

The funny thing with endo is that the doctors can't work it out.  Some women with severe endo get no symptoms and can go on to conceive.  Others, with minor endo get major symptoms and infertility.  There seems to be no rhyme or reason to it.

I am currently reading a book written by an endo sufferer which is VERY informative.  It's called "Reclaim your life ....... your guide to healing endometriosis" by Carolyn Levrtt and you can order it on the net for about £12 I think it was.  It gives you all the factual info plus LOADS of info on self-healing using natural remedies from herbs, to yoga, to diet, to accupuncture, etc etc etc.  I've found it very interesting.  It talks about the bodies huge potential to heal itself ..... and that with the right mindset and determination.... we can heal ourselves.

Good luck with it and as a fellow endo sufferer, please feel free to pm me any time.
Love
Gill x


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## Bangle21 (Dec 17, 2004)

Hi Mairi

/........ sorry - missed that typo on the Authors name, It's Carolyn Levett not Carolyn Levrtt!!

Gill xo


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## irisheyes (Feb 2, 2005)

No advice from me i am afraid but thats crap that after so long they have only found that out now!!! Hopefully you can get some sort of treatment with it- good luck!!!


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## Mairi (May 23, 2005)

Thanks ladies - it helps so much to know there are other sufferers out there! I have been reading loads and there seems to be alot of evidence to show diet really helps. I still have to see my specialist again in Jan to understand more about the extent of my problem but he did say he thinks I've had it for some time. I have only really had the bad pains since my IVF cycles though... weird. 

I'm pulling together a big list of questions for him - hope he's got plenty of time!!

I'll keep you posted.

Mairi xx


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## ☼♥ Minxy ♥☼ © (Jan 13, 2005)

Hi

Sorry to hear you've only recently been diagnosed with endo after failed ICSI.

I was diagnosed with severe endo (stage 4) when I was only 19 so have had many years to deal with living with this condition (I'm 36 now - 37 in couple of weeks  )

I would request a referal to an endo specialist (or at least a consultant with a special interest in endo) as they will have far better understanding of endo & how they can help you regards treatment eg surgical removal of the endo.

Emily (Eeyore) has already mentioned that there is a separate forum for endo sufferers on these boards (under starting out & diagnosis) but you may also find these 2 websites of interest...

www.endo.org.uk (registered charity - The National Endometriosis Society)

http://www.endo-resolved.com/diet.html

Good luck & take care 
Natasha


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## Reb (Mar 27, 2004)

Hi there, sorry you have been diagnosed with endo, especially after 2 ivf cycles.

I'd like to echo Minky's comments.  I would only take advice/treatment from an endo specialist.  Believe me, many bog standard gynys dont know how to effective treat this condition.  If you need to be treated you could try  The drfoster website will help you find a consultant nearest to you.  You should be able to get to see one quickly if you pay privately, mine was £140 and I was seen in 2 weeks and operated on (paid privately) 3 weeks later!!!!  I'm not saying you will need an op but you will at least get good advice about your endo may have effected your ivf.
It may be that having ivf without treating endo was the right thing to do so dont worry hun.


Good luck.

Love

Becca
x


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## astrid (Feb 10, 2003)

Dear Mairi
I am too sorry that you were not diagnosed before you went ahead with your treatment. It amazes me how someone in the medical profession can miss such a major factor when dealing with infertility patients. I too were in a similiar situation to yourself and had a series of treatments before they told me hat i had Polycistic ovaries. I felt cheated for such along time because i felt that both myself and Dh could have looked into the condition and looked for ways of treating this and maybe weighed up whether IVF would have been a worthwhile..To be given a full explanation is so important and it looks as if most women have been overlooked something during their IF years....
I do not know much about Endo but you have had a good response from girls who totally understand. Can i suggest maybe seeing a reflexologist or maybe going for acupuncture, it works wonders for treating PCO or Endo....
If you ever want to chat about anything else you know where to find us....
Take care
lots of love Astridxx


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## Mairi (May 23, 2005)

Thanks a million again ladies. I think I will try to find an endo specialist after I have seen my consultant in Jan.  He says he's taken loads of photos for us to look at! Yipee! I am also going to try to get my Care (IVF) consultant and him to talk to each other and maybe I can get a good picture of our future posibilities - if any.

2006 is a new year with new hopes and dreams!!

Mairi xxx


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## allison kate (Aug 9, 2005)

Hi Mairi

Sorry to hear about your endo, I do know how frustrating it can be.  I just wanted to tell you that it is possible your IVF either started or inflamed the endo.  I have just had two faied IVF's and each time have ended up with my endo returning.  This is due to the stimmnig drugs which unfortunately can stimulate things a bit too well sometimes.

The way my doctor treats this is to first have my CA125 blood test taken and then I get d/regged for about a month, with one bleed.  This normally clears the endo and it means I can try again (have just had my first FET cancelled in order to do this first).  They take another CA125 test just before the bleed to establish the endo levels.  I'm not sure if the dr's in the UK can treat the endo in the same way or if my dr is doing this because I want to keep trying.

Best of luck, I really hope they can give you some answers and that you can get it dealt with so you will be able to try again soon.

Lots of love
Allison xxxxxxxxx


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## Mairi (May 23, 2005)

Thanks Allison - I will bring that up with my consultants. I have one gyne who has found the endo and another who we went to for IVF. I think they need to talk to each other! DH and I had decided to
draw a line a not try again which was upsetting but helped us move on. Maybe we should think again after I've had the review consultancy.

I wish you loads of luck and hope you succeed....

Love Mairixx


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