looking for advice/support - newly diagnosed and struggling.

[GemmaK27]

I was taken to theatre in April for lap surgery (they only drained my cysts and sorted an intestinal adhesion) and following this was diagnosed with endometriosis. I wasn’t aware of the condition until this happened. Following this I have felt so isolated and have had no support. I saw a gynae 9 weeks post surgery who told me to have the coil fitted because the progesterone pill did not suit me. Having done this the doctor found another cyst (with a transvaginal uss after inserting the coil to check placement). I have since had an mri and this confirms I have two cysts at 6 & 7cms. I am now on decapeptyl injections monthly and taking hrt. I am not seeing my gynae to discuss the next surgery until, end of sept. Past 10-14 days my abdomen has been swelling more and more each day. Feeling hard and uncomfortable, with a lot pressure like being in later stages of pregnancy. I have lower back pain and a lot of what feels like trapped wind. I am panicking and cannot get any help from my gp. I also cannot get any response when calling the gynae. Are my symptoms common? Or is my body warning me I am going to be in agony again soon and need the surgery before I even get to my appt?

I am terrified.

Sorry for the long message but in advance any help is appreciated.

Gemma

[Pinkmice]

Gemma Try some Charcoal to help absorb the wind- available from most chemists,health shops - your message is how I felt when I was first told had endo.

Have had cysts - in the past - older than you Endo causes us ladies so much trouble

you may find that support from family,loved helps as most Gp do not have the time.

You are normal and if you need more- can help in some matters but have to be

careful as my trip through this endo has caused many problems which feel I can not

load on some-one so young as you are just at the start of your endo journey.

Stay safe,stay well,big hug

[GemmaK27 in reply to Pinkmice]

Hi,

Thank you for the reply. I will try the charcoal !

So am I disposed to just wait to be in pain again before anything is done? Is the bloating normal? I know I have cysts again but the bloating is getting worse and worse.

I have just read you have had an ovarian hysterectomy. How old were you when they did this if you don’t mind me asking? It is a treatment option I would like but am being dismissed because of my age (30).

Thanks

Gemma

[Pinkmice in reply to Pinkmice]

Gemma I was 30 { newly married} had to make the choice - you have to be sure as its

not an choice taken lighty.

Bloating is normal - the cysts can be blood filled - medical term choc cysts- you

can chose to have an small op to remove- I was on treatment for a long period

which caused more trouble for my health- still suffer the effects as endo moved

to other areas with-in my body.

You are so young - be careful -as Endo affects all aspects of a woman's life

I have to be careful as some things that happened to me - I find differcult and

causes me some distress as memories { some tied to the endo - must not load

to some-one whom journey will be different from mine

[GemmaK27]

The part i struggle with the most is knowing if I have them removed I am just waiting for them to re appear and having only had them drained 4 months ago and needing more surgery already, I just can’t cope living like this. I have a 3yr old boy and we made the decision early on we weren’t going to have any more children so for me the logical thing is to have it taken away. I can’t cope living knowing any second the pain will hit me and I’m back in hospital again. My anxiety is in overdrive. I just want it all to go away