Interesting website

Found this website. Informative but concise

asrm.org/Booklet_Endometrio...

Regards,

Barbara x

[MrsBaker13]

Thank you for sharing, some interesting stuff here x

[Cooka]

Thank you for sharing this x

[daffodil]

Thanks Barbara -maybe we should compile a list of good websites and books on the forum?

[Hidden in reply to daffodil]

Excellent idea Daffodil !

How are you lovely lady?

X

[daffodil in reply to Hidden]

Oh am trying to distract myself from the incessant pain,hence being on forum so much and into the wee small hours! If I could only fall over to sleep but the painkillers only take the edge off and pain seems worse at night when you are lying there trying to sleep ! This is just such a great, supportive forum isn't it! Starting to recognise all the regulars here too.Where are you in your endo journey?Hope you are controlled with your pain?

[Hidden in reply to daffodil]

You poor thing. What's the next line of treatment for you?

My right side is all stuck together, I have Endo in my POD and ligaments and I have diffuse adenomyosis,. I also have PCOS Not much fun and like you the pain is incessant.

Doctors seem to be reluctant to do anymore surgery ATM. And last Wednesday I had the mirena inserted at my GP's surgery. 3rd one as the other two were unsuccessful.

This forum is amazing and I get a lot of brilliant advice and so much support!

I hope you manage to sleep.

Best wishes,

Barbara. X

[daffodil in reply to Hidden]

Thanks Barbara - I do love your user name! My next line of treatment is not clear yet - Gp has requested an emergency gynae appointment and also a general surgeon re adhesions and I am hoping to get them asap.I have been putting of a total hysterectomy for many years,due mainly to Meningitis in 2008,leaving me with damage to my balance,migraines,memory loss and post traumatic stress and my pre existing ME,which makes recovery from surgery longer and also have so many drug allergies,so have real problems getting pain relief.I am on crutches in house and if I manage out have a wheelchair as have 24/7 vertigo from Meningitis which has damaged inner ears and cerebellum.I feel a complte wreck and have so many problems I must bore people.My GP is very supportive and says I'm unusual lol !!Now however I can't take any more of this pain.Dr thinks the stabbing pain is bowel adhesions more than endo,but I know it is both.I have learned a huge amount from the posts on here,far more than from books and really am not sure if hysterectomy would make things any better,considering my last lap( 10yrs ago) was stage 4 endo,dense adhesions and possible adenomyosis.They said the only option wa s total hysterectomy and radical excision of all endo and that in my case there would be big risk of damage to major organs. To be honest I am reluctant to make myself any more incapacitated and very apprehensive.I am 48 so live in hope of menopause,though reading on here, endo doesn't stop at menopause if it is still there! For the last 10 yrs I have been on every type of contraceptive pill,depo provera,synarel and decpeptyl.Last 3 ,especially the Decapeptyl have been great in stopping periods,so I have had pain free spells thankfully.With GNRH agonists ,can have no more as now have osteopenia and when I tried with HRT added the pain came back.Back now on depo,which no longer seems to be working.I can have till 50yrs,but cant bear this pain any more so guess the option is surgery.Have been offered the mirena every time,but something about having a foreign object in my body doesn't appeal to me at all.My mum had this a long time ago and was found to be allergic to whatever it is made from and ended up with terrible infection and having to have it removed.It is really interesting to read everyones different experiences as we are all different.What really gets me angry is reading again and again,my own story( fobbed off ,told it was stress causing my pain,not told I had endo till was 38yrs when had emergency lap - turns out it was in my very first lap report at 18yrs.My Gp told me nothing significant was seen and I had a hormonal imbalance which pill would sort.Actually it did for about 10yrs make bleeds bearable and I think saved my fertility,allowing me to have 2 wonderful kids.But I get so mad,when I see young women still saying they are not taken seriously.A relative was one of the unlucky ones,who was not taken seriously until she couldn't have children.The effects of endo are so far reaching,that much more needs to be done for us ladies suffering.

However my specialist is in Aberdeen one ofthe countrys only endo centre,so if I do go ahead I will be in very good hands.I actually only discovered this when someone posted the specialist endo centres here and was very surprised to see my gyna there!

I have just had my pills now,so off to try to sleep now.Speak again soon.Sending you a big hugx