Newly diagnosed

[Lj84]

Hi all. After 4 laparoscopic surgeries for endometriosis at one hospital, I was then diagnosed with adenomyosis after an MRI scan, an emergency admission took me to a different hospital and today I was examined internally and told I have stage 4 endometriosis recto vaginal disease? He said he could feel the nodules internally? Has anyone else been diagnosed with this and could there be anything else that felt like nodules? I'm in shock as the previous hospital has fobbed me off with morphine etc for years and the first time I see this guy I have a full treatment plan for next six months, he was truly amazing! Thank you in advance.

[Mummy1982]

Oh hun sounds like you have been through alot hun and I'm sure it was a shock to be told this.

I got diagnosed with Endometriosis and Adenomyosis in March, I had a laparoscopy for suspected endo after 2 years of chronic pain, u really didn't think i had endo so I was really shocked to wake up and be told that I had both and that I would need a hysterectomy!

I also have rectovaginal endometriosis and having Endo in that area can cause a lot of pain which you are obviously experiencing.

I am also on a huge dose of morphine 😦.

I have just had a zoladex injection that u had a really bad reaction to, my feet are really swollen, all my bones are hurting so bad. I have been having a hot flushes.

I will be put on the waiting list for hysterectomy at next appointment.

What is your treatment plan hun?

Xx

[Lj84 in reply to Mummy1982]

I had a three month shot of prostap yesterday and am on HRT now. I'm definitely in shock, I've been telling my old gynae my bowel was involved for years and they just said it was hormonal and common. But the new one examined me yesterday and said he could feel the nodules straight away. I was really surprised but so grateful x

[applebird]

Hey,

Hope you're ok, I've had exactly the same diagnosis and I know it's a shock. I had as far as I know one nodule that needed removed. I had paid privately for my third surgery which I thought would be routine get rid of the endo, they discovered that the bowel had been infiltrated (nodule) so had to close me up (expensive mistake to go private!!) - surgery involving the bowel is multidisciplinary (gynae/gastro) and you need to be in a nhs hospital with icu etc just in case as it's more serious than regular endo surgery.

In saying all that it sounds like you have an amazing doctor and I'm so glad you're getting good treatment.

I'm surprised they didn't see the nodules on the mri - I had to have one done before they could do 4th surgery. Maybe ask the doc about that. With my adenomyosis, I have

an adendomyoma in the wall of my womb that can be palpated vaginally and can also be described (I think) as a nodule. So I wonder could he mean this? You're entitled to see your hospital notes and can even ask for a copy of any letters sent to your gp from the consultant re. diagnosis at the reception of your gp practice.

I freaked out massively when I found out about the bowel being involved. However the nodules may only have gone a few millimetres so having bowel endo can just mean a tricky excision surgery. I spent months worrying about ending up with a colostomy, but the risk is very small and even if it does happen it's usually temporary while things recover. For me I was on prostap for a while to try and shrink all growths before my surgery. It was still done laparoscopically and felt pretty much the same as after other endo surgery, I was just on higher pain meds and took me a few more weeks to recover properly.

My best advice is don't freak out, trust your doctor and remember they only have to tell you the risks to cover themselves. I know it's horrible, but try to relax and just concentrate on the fact that they know what's wrong and it can be treated which is way more positive than being stuck on morphine!

Re. Hysterectomy as mentioned above, they have said that is probably going to be the outcome for me as well, however hubby and I are currently trying for a family - I'm coping on paracetamol!! (even with needing adeno surgery so it can be done) Starting acupuncture soon too. If you have any questions or just need a chat msg away.

Best of luck xxx

[Lj84 in reply to applebird]

I had a three month shot of prostap yesterday and am on HRT now. I'm definitely in shock, I've been telling my old gynae my bowel was involved for years and they just said it was hormonal and common. But the new one examined me yesterday and said he could feel the nodules straight away. I was really surprised but so grateful x

[applebird]

That's good chick, the prostap will help settle things down for you. Your doc sounds fab. Be good to yourself right now and take time to relax and do things you enjoy.

Feel better soon xx