Options for endo/adenomyosis

[Laura8397]

I’m starting to loose the plot now! My specialist has given me a diagnosis of ‘Suspected endometriosis/adenomyosis’ as he didn’t find anything during laparoscopy but my symptoms fit and I’ve resonated to Prostap injections.

He’s given me 3 options, I don’t really like any and I’m feeling stuck:

1. Stay on the Prostap injections and add back HRT. With the side effects that accompany this.

2. Get pregnant. I’m 22 and newly married, not really in the position to start a family right now.

3. Hysterectomy. Really don’t want to go this way because we want children in the future.

Just want to vent really, I have no idea what to do. Any suggestions? xx

[metoyou42]

Hi Laura8397

You are doing so well but it is a long road with any sufferer that has endo because it is all still pretty foreign to some gynaecologists & the best specialistis the endo one.

Unfortunately the options now by some gynaecologists are hysterectomy & believe that is the answer but their are so many other options before that so please keep asking what they are & definitely ask women in this group to help because between us all we have been down the road you are travelling.

You maybe able to freeze your eggs then if you decide hysterectomy is for you then later you have your eggs available but would have to go down the route of a serogate mum but it would be your eggs along with your husbands sperm etc their are lots of possible ways which you can discuss before agreeing to a hysterectomy.

Like other women I suffered years & years of endo symptoms but it was not known back then like it is now so I was fobbed off with 'heavy periods' constantly until I saw a fantastic gynaecologist who saved my life.....

I did however battle the pain for years & got pregnant at 27yrs very successfully but without endo diagnosis & then after my 1st son my symptoms worsened & during my 9mth I suffered badly with pains & bleeding but had 3 healthy children over the next 7yrs but my health suffered badly,I missed so much work due to pains,heavy clots,headaches,could not walk due to pain that before my 3rd child I opted for a hysterectomy because I had been down every road but nothing worked for me.

I had 2 healthy sons so thought I was lucky only now do I see that I was extremely lucky & they were all my miracle babies because my endo was so advanced that I should not have had children at all & had they known then what they knew after my care during pregnancy would have been 100% different & nowadays the care with a endo lady & pregnancy is so much better understood.

The hysterectomy was booked but when they did the routine pre op care they found I was pregnant with my 3rd child so it was put on hold until after his birth,we nearly lost him several times due to the endo causing early labour at 25wks then again 3 more times after that & at 36wks he was delivered by emergency c section & was in special care for a week but was a healthy baby after discharge & I had my hysterectomy 3-6mth after him & I never looked back.

I am now 48 & it's a decision I have never regretted,of course I wanted more children a little girl in fact but I was lucky to have my 3 sons with the endo I suffered along with ibs & other health issues,my life is fantastic & I still take HRT because I had my ovaries removed too as the endo was on them too so decision to remove it all was adviced.

The decision is different for every single women so don't feel rushed into anything,weigh up all your options & ask for advice of having children later in life following a hysterectomy but using your eggs etc their are so many options out there to suit all different situations so make sure you ask for them before deciding,I know the road is hard because of the pain & misery but try new treatments & buy yourself time for when you are ready to bear children because one of those treatments may work & you can bear your own children & have a hysterectomy later in life.

If you need any more advice please do ask & I wish you well....

Sarah xxxx