Feeling overwhelmed and emotional about my MRI results ❤️

[Chester28]

Hi all,

I am currently going through lots of mixed emotions at the mo as I finally got my mri results back on Thursday, however I wasn’t expecting to be told that I will need to have two operations!

They have told me that I have deep chronic and active pelvic endometriosis and have a large left ovarian endometrioma that is effecting my uterus and bladder, which explains some of my symptoms so will need laparoscopy for that, but my second operation is for around my bowel as I have adhesions to the bowel and Adhexa, and will need a bowel specialist for that. It has taken me back as I knew it was bad but didn’t think it would be that bad! So in a bit of shock tbh.

The doctors and nurses have been very helpful and supportive, however I do have a few questions if anyone knows or can reassure me about:

just want to know if anyone else has experienced something similar and would be able to reassure me with the process of the surgeries as I’ve never had surgery before so a bit nervous about it all?

Also another thing that they did mention was that they did find a few heamorrhagic foci in my right ovary and that my right Fallopian tube looks slightly congested. They said they will look into it for me when I have my next appointment and don’t seem too concerned, but said it will be to do with the endometriosis, however is this something to be concerned about or is this normal to get with endometriosis?

Finally they said they are happy for me to continue with zodalex as long as I take my hrt with it and will keep me on it until I have my laparoscopy and did say I could be waiting a while for surgery, which is ok but I am concerned with the long effect of taking zodalex as I have heard not so nice stories about it and just wanted to know if anyone else has taken it long term and have not had issues with it? ❤️

Apologies for long message and appreciate anyones response thank you ❤️❤️❤️

[moomoo]

I think just replied to your other message about zoladex. I just wanted to reassure you whilst surgery isn’t great 👍🏻 I’ve had 3 laparoscopic surgery’s now my first and emergency and loss of a tube, the second 3 years ago to diagnose and treat endo and adhesions as my ovary was stuck to appendix, and pelvic wall and scar tissue from the first emergency lap. The worse part of surgery is the anestetic can make you nauseous after, but wasn’t this time for my lap for hysterectomy/oophorectomy. And then the recovery it’s not quite 2 weeks and I’m feeling much better a bit sore, but from what I remember the recovery was quicker last time. We are all different though and recovery can be longer or shorter depending on our bodies. I have many chronic conditions. The worst part so far was the constipation after as I can only take codeine and paracetamol so codeine wasn’t helping and the laxatives weren’t helping. I’ve heard people who have the bowel issues normally have to take a bowel prep to help clear the system first. So you may need that? I was home the same day for my last two ops

[Chester28 in reply to moomoo]

Hi moomoo thank you for your reply ❤️. I am so sorry you’ve have to go through all of that 😞❤️.

After the three surgeries do you feel like it has helped at all or you still feel the same as before?

That is good to know about the anaesthetic that it can make you feel sick etc.

yeah they did mention about recovery time and thought that two weeks doesn’t feel enough, but like you said it does depend on the individual as everyone is different and my work have been supportive and did say that when I do have surgery they will give me plenty of time to recover.

Ohh yeah that is a good point actually they didn’t mention this, but I would of thought they would make sure the bowel is clear etc xxx

[R_elep]

Hi! Really sorry to hear you’re going through this but try focussing on the fact that at least they know what it is now and can focus on getting you feeling better with the surgery.

My endo sites sound very similar to yours - got diagnosed last year and just had my surgery earlier this week! It was a ‘double’ surgery like yours - bowel (with adhesions) and ovary mainly, so needed a bowel surgeon and a gynae surgeon, and like you I had a large endometrioma (on my right ovary).

My main fear weirdly enough was about the general anaesthetic - as I’d never had that before, but honestly the doctors are so skilled and do it so routinely, it’s not even worth worrying about! My surgery took about 3 hours.

You might have read that the gas pain after surgery is pretty full on - I’d definitely agree with that! Just keep chugging down loads of peppermint tea and keep really hydrated - drink lots of water to help with bowel movements after the surgery

If you have any more questions just reach out by message! All the best! X

[Chester28 in reply to R_elep]

Hi R_elep thank you for your reply ❤️

Yes that is very true that I have finally got the answers I needed and that I wasn’t going insane about my pain, as it got to the point that it felt like it was all in my head the amount of times I got dismissed etc, that I ended up in a&e near my mother in laws as I was in so much pain and have ended up being referred to the endo clinic there, as they have been amazing and supportive compared to where I live 🙈.

Aww so sorry you went through all of this too 😢! I hope you have a speedy recovery and get better soon ❤️‍🩹. Have they managed to do what they told you that they would do ❤️?

Yeah tbh that is my fear about the anaesthetic as I dunno what I would be like, but that is reassuring to know that it will all be ok thank you ❤️.

Aww thank you so much for your advice on that will make sure I drink plenty of that. Did they do a bowel prep with you at all to clear the bowels before having surgery by the way?

Thank you so much for your help ❤️

[R_elep in reply to Chester28]

That’s great that you’ve found somewhere supportive to be treated! Haha I was the same - I knew the A&E layout off by heart 😂

Yeh as far as I can tell. The cyst was a lot bigger than they’d thought it’d be but they seemed to clear it. I was so drowsy on GA when the doctor came around to tel me the outcome but I have a follow up in a few weeks to discuss things more!

I had to have a bowel prep but not sure if that was for the procedure or a scope that I had at the same time (I needed that as I have family history of other bowel issues). Best of luck! Xx

[Chester28 in reply to R_elep]

Omg 😂🙈, I mean we laugh about it now but It is really bad how they can be at times though, they completely dismissed me up my way and just never took it seriously and just felt like a loosing battle until I went somewhere else and was just in shock how different they treated me and was nice to feel like I was being listened too as well!

Omg that is scary that it was bigger than expected, but that’s good they have managed to clear it for you ❤️. Aww hope it all goes well with your follow up appointment ❤️.

Ohh right I see that makes sense now. Thank you and best wishes to you too ❤️ Xx

[Roobs33]

Heya,

Im sorry you have got a lot to take on with your diagnosis. It can be very overwhelming, but at least now you will be able to get help. It can be a huge shock though. I only got told the extent of my endo when I had just come around from the general anesthetic after my first surgery. I got diagnosed about 1.5 years ago now and have had two surgeries. My diagnosis was very similar to yours. I had a large endometrioma on my left ovary, everything was stuck together with adhesions and my bowel is still stuck to my uterus. I haven’t had my bowel sorted yet due to undergoing IVF to try and have a second child. I had an MRI 6 months after my first surgery and this showed the extent of the bowel endometriosis and also a very enlarged and inflamed right fallopian tube. I had the second surgery to clip the tube as it releases toxins that aren’t good if you want to conceive. They can do dye tests through the Fallopian tubes during surgery to see if they are clear, which might be worth knowing for the future.

Like any surgery it can be nerve wracking. For me the worst part is coming around after the general anesthetic as it always makes me feel sick. I do remember having gas pains in my shoulders after the first surgery. Peppermint tea is good for this. And definitely take laxatives if you are having codeine as I got quite blocked up once and it made the pain worse. I found the recovery not too bad and just took it really easy the first week after surgery. I remember sleeping a lot immediately after.

Really wishing you the best of luck with everything. I’m following an anti inflammatory diet to try and keep everything at bay until I can have my bowel surgery.

Take care and let me know if you have any other questions xx

[Chester28 in reply to Roobs33]

Hi Roobs33

Thank you so much for your reply ❤️

I am so sorry to hear you are going through this too ❤️.

Aww I really hope the ivf goes well for you both and let me know how you get on ❤️

Yeah I am a bit stuck with regards to when I should try for a child tbh, as me and my partner would like to have children, however now being told that I need two surgeries I dunno how long I will be waiting for both and was thinking to have my first surgery and they put the mirena coil in and once I have my second surgery and fully recover from it all that we remove coil and try then, but if there is a long wait between them both, we won’t be trying until my early 30s. Do you think it is a risk to leave it or will it be ok? I’ve spoken to my gyno doctor about it, but she said it’s difficult to say as every woman is different and I completely understand and I know I will be able have a child one day, I just don’t want to higher the risks if I can’t by delaying it if you get me.

That is good to know about the Fallopian tube and will see if they could look into all of that for me, as I am slightly concerned when it mentioned about my right side too.

Yeah I think those are the main things that worry me when coming round is the anaesthetic and gas, but I really appreciate the advice with the peppermint tea and laxatives too and will definitely keep note of that ❤️. How long did it take for you to fully recover?

Aww thank you and wishing you all the best too and thank you so much for your advice ❤️ Xx