Deep infiltrating endo and adenomyosis

[pjallday]

Hi all, I just needed somewhere to write this down as I’m feeling so down about it and I don’t feel like I can speak to anyone about it.

I had a lap about a year ago now and the doctor said that it was Stage 1 endo and that he removed it. However the symptoms remained so I was referred to an endo specialist who took an MRI and he’s just given me the results.

stage 4 deep infiltrating endo with adenomyosis and a heart shaped womb… completely different to what I thought it was.

the specialist pointed to all the endo tissue he could see and showed me how different things are stuck together via the MRI scan and I’m just so confused how they could have missed this in the surgery.

The first doctor also said he couldn’t see how this would effect my fertility but now this new doctor has said that he shouldn’t have told me that necessarily because there’s various factors that could effect it.

The new doc has referred me to a gastro specialist to get a colonoscopy (which fills me with terror 😂) to get an understanding of what to do next.

I don’t have a question really I’m just so upset at all this, thinking it was one thing and it all being wrong, and feeling even further away from any progress… I’m so overwhelmed and I just hope someone out there understands how I feel.

[Sickofbleeding]

Hi pjallday, I’m so sorry you’re going through this. I completely understand how overwhelmed you must feel. It’s truly a lot to take in. Hopefully, you will get the proper treatment and some relief to your symptoms now that you have been correctly diagnosed. Sending you lots of positive and healing energy 🤗

[pjallday in reply to Sickofbleeding]

Thank you so much for your reply! It’s so helpful just to hear from people who get it. And you’re right a clear diagnosis is the first step to treatment

Hope your own health journey is okay. Sending love and thank you for the support ❤️

[AlexaMac]

Hi l can understand your anxieties. I had 2 separate lap surgeries the first was December last year and the most recent one 4 weeks ago, l am post menopause.

The first surgery was removal of ovarian cyst, both ovaries and both fallopian tubes. My first surgeon did not request an MRI scan for me thus he merely did a sampling (to be on the safe side) and that came back with cancer traces.

lt proved when l was given an MRI before the second surgery the cancer was found also had 19mm endo which had been mis-measured by my first surgeon as being 1.9mm when the labs came back there was a level B cancer for which l am to consider radiotherapy for 30 sessions over 6 weeks.

Your case is more intense than mine but it seems you have a good team on your side, l sincerely hope you soon have the answers you need.

Also when l awoke from both surgeries l had no bloating pain my anaesthetists had exorcised all the gas for me.

If you want to ask anymore or simply chat l will check back again, take care

Alexa 🌸🌸🌸

[pjallday in reply to AlexaMac]

ah gosh thank you so much for you’re reply.

I’m so sorry for your experiences it sounds awful, and I seriously hope the treatment you choose helps you. Sending so much love and support.

I hadn’t looked at it that way… being with a good team now, so thank you so much that’s such a positive way to look at this

Wishing you all the best

❤️

[AlexaMac]

Hi, pleased my words could help you along a little.

Have my app with radio team on Tuesday next week. Am going the question if it will DEFINITELY prolong what time l have left as l shall be 77 next month and really want to be able to still get out and about again. Was not allowed to drive for 6 weeks after each of my surgeries and think this time l will not be allowed for up to 10 weeks including treatment and recovery time.

My little car is my link to the outside world as it is to far from where l live into town and the bus service is a little sporadic.

But enough of me, please stay strong and keep your diary up to date with any and all the treatments and information you are given so you can look at it when you are at home and have the peace and time to absorb each stage.

Take care, Alexa 🌸🌸🌸