Trying to process diagnosis

[Karen0477]

Hi everyone,

I underwent my first lap yesterday was given the new of endometriosis found; uterus, tubes, ovaries, bladder, bowel and peritoneal lining.  He said I will have to go on medication for suppression and treatment.  Plus I believe he will be sending me to a larger centre for treatment of the bowel as he said he wouldn't touch it.  He did cauterize as much as he could.

So now I'm just trying to process the diagnosis.  I already have children and have resolved to not have more, but I just want to be healthy and try to figure out how to best deal with this diagnosis. 

Thanks for reading

[applebird]

Hey, it can be a real shock to be diagnosed with severe Endo. Especially when you are booked for a second op before you're even recovered from the first one!

Remember to keep a copy of the discharge letter for your gp so you have a record of exactly what was found - memories can go a bit fuzzy after anaesthetic.

My best advice is read all you can about the condition, there is a website called Endo resolved which helped me understand a lot more about treatments both medical and holistic (acupuncture and Endo diet v good, also peppermint tea for bowel Endo is great) 

Make sure you are being treated at a bsge Endo centre and are having excision surgery as this is the gold standard and will give you the best surgical outcome.

The hormone treatments aren't as bad as you think and will give you the best chance of maintaining the effects of surgery, severe Endo can be quite aggressive and will come back if not held back.

Look up support groups on Endo uk - there may be a group near you, it can be nice to share experiences with other women who understand in person.

Over everything, remember Endo is different from person to person and different things work for different women. It may be a process of trial and error before you find the combo of medical and holistic treatments that work for you but you will get there - learning about all that and implementing lifestyle changes I found took my mind off stressing about the illness and made me feel empowered taking back control of my own body - also it helped so win win! 

If you are in your 20s/30s esp they will do everything they can to preserve your rep sys for as long as poss, hyst is an option but is not a cure all as deposits of Endo may be left in the abdominal cavity - if they leave your ovaries the cycle will continue. It can also cause as many probs as it solves so don't jump to thinking this is the next option. You probably have a way to go down the road before that discussion. 

Take it easy on yourself and rest up as much as you can, it will take 6-8wks until you're feeling more like yourself, one step at a time. Xxx

[AnnaB1979 in reply to applebird]

I know it wasn't meant for me but that was a brilliant reply. X 

[Karen0477 in reply to applebird]

Thanks so much for your reply!!  I have a great doc who wrote everything down for me post op, which was great because I was quite foggy after surgery.  I live in Canada and the centre he is going to refer me to is a clinic that is specialized in endometriosis as well as other chronic pelvic issues.  I'm very hopeful that they will be able to help.  I have had bowel symptoms for the past year and I am getting quite frustrated with ongoing issues, so I am hoping that with medication perhaps that will begin to contain symptoms while it is decided about bowel surgery.  I am in my late 30s, so not sure if they will try to save my reproductive organs or suggest hysterectomy.  I follow up in 6 weeks, so hope to have a plan in place at that time.  For now, I want to heal from surgery and wrap my head around diagnosis.  Thanks again for your thoughtful reply

[Princessming123]

I'm so sorry it is all so stressful with so many other treatments and an operation in the future. However I imagine you have been suffering for a long time with the symptoms and so hopefully this is a first step towards getting better and being healthy! 

[GrittyReads]

So sorry this is all so painful and long-drawn out.  But there is great support on here. 

In particular read all the posts by 'Lindle'.  She is a fount of information - especially on the correct procedures/protocol that Medics and ordinary Gynaes are supposed to follow with people with Endo. 

Also, make sure that the 'larger centre' he is sending you to is one of the specialist 'bsge Endo Centres'  that Applebird mentions (above). 

Lindle gives more info on these.

Good luck and meanwhile, try to spoil yourself and reduce stress.

[Karen0477]

Thanks everyone for your replies.  It's nice to know I'm not the only one dealing with these things!!

[EricaJ26]

I experienced the same, for years with no relief. However, last May, I discovered a treatment which has seemingly cured my endometriosis, PCOS, related pain, and ALL symptoms. Apparently, many of us are estrogen dominant (birth control pills make it seriously worse because of the synthetic estrogen) and the elevated estrogen in our bodies throws the body out of synch. I began using an over the counter progesterone cream (ProgesterAll) which is also available online. I used it religiously morning and night...into the second month of using it; huge results. No more cyclical migraines, horrible ovarian pain that lasted for days, cysts, or ANY of the terrible issues that I had been experiencing for years. I've currently been on it for right at a year and have never had such regular periods and been so pain free in many years. All of my migraines and 'sinus' migraines and allergies have quit too. I am not taking any birth control pills or anything that could possibly increase estrogen, as the progesterone naturally balances it and counteracts the effects of estrogen...thus, the ovarian pain from my ovaries being literally fried by too much estrogen has totally stopped... I first started experiences all of those symptoms with the use of birth control pills when in my early twenties...I am now in my mid thirties. Months after using progesterone the endometriosis, all symptoms of it, literally vanished as the elevated estrogen was no longer worsening it, etc. This is just my personal experiences but please consider reading up on estrogen dominance and the use of progesterone to counteract too much estrogen! It literally gave my life quality again and ended all of my pain and the constant sickness.