Is the end in sight???

[Stopalready]

Hi everyone, this is my first post and reading others seems I am in the right place to discuss these issues with others who know exactly what I am going through. Others, even close friends, I think at times just dont get it...

From what I read others too have had a long long road to diagnosis and treatment....here is my story.

I found a lump in my stomach in September 2019, I had noticed pain in that area for a while, particularly after exercise but nothing I could feel. I discussed with my doctor and finally had an MRI scan in April 2020....I had also experienced severely heavy painful periods at this time.

My scan was smack in the middle of lockdown (I remember my ex reporting me to Court for having my mum watch my young daughters to attend hospital 🙄..but that's a whole other story). I was home from the scan for 1 hour when my GP called to say he was referring me to a 'rare' Sarcoma specialist.....

After a very stressful 3 week wait I took a call from the consultant (no FTF due to Covid) who listened to my history (2 c-sections / painful periods) and diagnosed a 2.5cm x 3.1cm endometrioma in my left rectus abdominal muscle (which I read is quite rare). In addition previous scans had also noted more scattered Endo which appeared to be fused to my sigmoid colon (also fibroids and cysts on my ovary)

Due to what has felt like ridiculously long NHS wait times I finally had a laparoscopy in Oct 23, no significant issues with fusion of Endo and a plan for Zoladex to deal with the Abdominal Wall Endo (AWE). As I was peri-menopausal I was also prescribed oestrogen only HRT.

After 5 months of Zoladex the pain became unbearable in the lump and my GP sent me for another US and asked Gynae to bring forward my Aug24 review.

So US and CT scans now show the lump has grown 5.3cm x 4.9cm and my Gynae, some 4 years since diagnosis, is using words like 'suspected' endometriosis?!? To say I am scared is an under statement, particularly as my list of symptoms is growing every week!

I saw Gynae last week who has advised that she will be doing a full hysterectomy (within 6 months) subject to how the Abdominal Surgeons want to prioritise a separate surgery to remove the lump....apparently although they 'suspect' AWE the surgeons may choose to ignore that and treat as suspect and urgent 😔

What I am finding most difficult is the lack of urgency on anyones part.....Gynae confirmed lump could always have been suspect OR could have been innocent and turned suspect and yet weeks / months go by with no feedback 😌

Now waiting for MRI (5th June) and fingers are crossed.....sorry for the long post x

[Moon_maiden]

Hi

How are you feeling?

It does get hard to discuss with others and you must be worried about what’s going to happen, especially the lump. I’d assume they don’t believe it’s life threatening though. Not long for MRI now, let us know when you get the results.

Do you want a hysterectomy?

[Stopalready in reply to Moon_maiden]

Hi, thanks for the message....its all happening here atm. Managed to bring fwd the consultation with the abdominal surgeon to this thursday, which is great as a long wait until July.

I do want a hysterectomy I have a lot of pelvic pain, constantly atm, which always makes me worry that the cysts / fibroids have turned nasty.....much more peace of mind with it all removed, I am 50 next year and have had my babies now 😍

[Moon_maiden in reply to Stopalready]

That’s great you’ve got the consultation sooner, 🤞 it goes well. Let me know how it goes.

I had a hysterectomy in 2020, I was 51, I needed one at that point. I get what you mean about things possibly turning nasty, especially fibroids. Gynae was worried about mine after op but they were normal. Much better having peace of mind 🙂

[Stopalready in reply to Moon_maiden]

Completely agree....I'll be glad when they finally remove the lump....and obviously any test on it confirms endo and nothing more sinister....thanks for your support will.let you know how the scan and consult goes 😁

[Moon_maiden in reply to Stopalready]

Hopefully you won’t have Endo either 🙂

[Stopalready in reply to Moon_maiden]

Well my current diagnosis is endo and Adenomyosis.....just want them to remove what ever it is and move on 🙏 will update you after my appts 😊Can I ask, do you have endometriosis? X

[Moon_maiden in reply to Stopalready]

Hi

I’ve been told no Endo left, although it’s never been removed from the bowel and told it was there from first op. I’ve had five ops since 2020 including total hysterectomy, probably adeno as enlarged uterus. I’d let mine build up over the years as I coped each month so it got pretty chronic. At the hysterectomy, second op, he had to put my anatomy back to normal before taking out organs but still left bowel adhesions 🤦‍♀️🙄

try to make sure they will remove all adhesions and check everywhere and remove all Endo.

[Stopalready]

🥺 Hi gosh that's aa lot of ops ....I saw the abdominal surgeon yesterday he is lovely and really reassured me, although couldn't comment on the MRI pics for the gynae side of things.

Plan is a 6 hour op, 3 hours for hysterectomy a d 3 for removal of the endometriom deposit in my rectus muscle ....3 months recovery afterwards bit glad it's getting sorted.....should happen in next 6 months 😬