Stage 4

[sallymm86]

Hi there

I have been diagnosed with stage 4. The doctor said there is a lot of endometorisis and its covering my ovaries. They are going to do a MRI then figure out how best to get it all. Is there going to be damage to my ovaries?

Thanks xx

[jlmackenzie]

There most likely will be damage to your ovaries...and I hate to be the one to tell you this. I'm stage 3 and my tubes are already affected and my ovaries have scaring on them as well. Even though there might be damage though that doesn't necessarily mean infertility(if that's a concern) Yes it might cause a problem but the drs can help with that. And even though I said there would most likely be damage...there could be none at all in the long run. Keep your chin up and don't freak out until you absolutely have a reason to. Don't stress until you have conclusive results

xx

[tparunashvili]

I was diagnosed with stage 3, I've made laparoscopy and my doctor told me that my ovaries were damaged and he had to make them small, however, after two months it started working. So don't worry, think positive and have a good luck.. xxx

[Smileycat]

Hi. I was diagnosed with stage 4 endo on my first lap and they could not remove it as it was close to my bowel and would need assistance from an additional surgeon. I had an MRI scan to ascertain if it was deep infiltrating endo - fortunately not. I had a second lap 8 wks after the first and they excised all endo including endo from my ovaries. They also clipped one of my tubes due to hydrosalpinx. My gynae advised to wait two cycles and they should be back to normal working order so I can proceed with IVF. Don't worry, they will do what they can to preserve your ovaries. just ensure that your gynae specialises in endo and has BSGE accreditation. There are centres set up to deal with this.

Good luck!

[sallymm86 in reply to Smileycat]

Thank you. it's good to other people experiences with it xx

[sallymm86]

No no thank you both for your replies. I would rather have a realistic idea of what my diagnose could mean. I really wasn't sure about posting as I didn't know if I was over thinking things, but I just had a ask, then I can prepare myself if it's going to be news that we didn't want to really hear lol

It's just hard as we thought that if I had it diagnosed it would be removed, but as there is so much I'm still waiting to have it removed. It's good to know what is causing my pain but it's hard still having to wait to find out if there is damage.

Thanks again xx

[Smileycat in reply to sallymm86]

Hi. I know it's a worrying time but sounds like you're in good hands. I was really upset to wake up from my first lap to hear I'd need another one! Hopefully you receive the MRI results quickly. We received the results within 24 hours! . I went private and it was picked up by my insurers as endo is a recognised condition. If NHS I believe they expedite stage 4 or recto vaginal endo laps as it is the most severe. Your consultant should be aware of your objectives - to relieve pain and preserve fertility.

Please try not to worry. Wish you the best.

[ClarePerry1]

Normally a lap would be clear diagnosis as to the extent - as it is not always visible on scans, are you having excision xx

[Smileycat in reply to ClarePerry1]

Sometimes you need both lap and MRI to understand if it infiltrates your other organs. E.g bowel as this would not be seen on a lap. although it is acknowledged that an MRI scan has its limitations hence doubling up.

[ClarePerry1]

I had both admitedly not a endo specialist for lap (gen gyno) so he he missed everything, had mri nothing not till open surgery was detected uterus stuck bladder (with endo spec) - I am not the norm thou xx

[victoria044]

Hi, I have stage 4 deeply infiltrating rectroviginal endo having mri on Tuesday. Awaiting major surgery with endo specialist. I totally understand your concerns about ovaries etc. Hugs xx

[sallymm86]

That's what the doctor said I'm sure it was something about checking it on my bowel. I have been really lucky and my doctor is an endo specialist. So I feel like it I'm in safe hands. Trying not to worry but sometimes it just feels a bit overwhelming lol xx

[victoria044 in reply to sallymm86]

Yeah I feel the same. My consultant the the endo was everywhere and was very nasty. I also have adenmyosis. What's your pain like do you get excruciating back pain and numbness in your legs? Xx

[sallymm86 in reply to victoria044]

My pain is stabbing pain, horrendous back pain, sore when going to the toilet in all forms, painfully intercourse, pain going down my legs, a weird pinching pain round hips and sore hips. The pain can last for over a week, even if my bleeding only lasted a few days.

I was quite a naive teenager and didn't discuss period pains with anyone so I have always had this pain since I was 14 (now nearly 29) I just thought it was normally until I snapped at my sister one day and she was ow what's wrong with you so I told her and she was like "you do know that's not too normal haha"

[victoria044 in reply to sallymm86]

I have the same pain. Horrendous back pain with sciatic pain as well which is constant. Bowel pain,pain with intercourse which is just awful stabbings pain. The list goes on! Painkillers are useless. just hoping we both get our ops thro soon I want to be able to enjoy the summer xx

[sallymm86 in reply to victoria044]

I really hope so! Fingers crossed for us both and we get some relief! Xx

[sallymm86]

Thank you for the information. I just read the list and I didn't even realise I had been attending the Edinburgh endometriosis centre. My doctor: professor Andrew Horne, is lovely and I was told by a colleague of his that he is great and this is "passion" of his. (Her words haha)

He did say to me that my next operation, will be done by two surgeons and possibly it would be him.

Thank you so much for the information xx

[Ginger5641]

I'm sorry. That's not good. Every Dr. is different on... What? They decide to do in order to help someone. Try to be positive even though that might be challenging. Best of wishes. I am very aware of stage 4 Endometriosis. It's very painful, too.

[sallymm86 in reply to Ginger5641]

Thank you

[Ginger5641]

Thanks for your information you shared. Greatly appreciated. Wish you luck as well.

[Ginger5641]

Your welcome. Keep reaching out to others. It will help. Hope you feel better.

[sallymm86 in reply to Ginger5641]

Thank you. This forum has been great xx