Endo of the appendix?

[MaloushkaPat]

Hi everyone,

First of all - Apologies for the long post!

As some of you may know, I had a diagnostic lap exactly 2 weeks ago today which did not find anything. When the nurse discharge me after my lap, she told me to go to my GP if I was still in pain (which I found a bit funny as I am in pain every single day..).

Anyway, I went to my GP tonight. I saw a locum GP who was truly amazing and who has been the first one to make me feel that it's not all in my head. I told him that I have been feeling that no-one has been listening to me and that sometimes I feel it is all in my head, to which he replied that if I am in pain, obviously it's not in my head, that means something is wrong. It was like a breathe of fresh air just to hear this from a professional doctor!!!

The GP took a total different approach than every doctor has taken before and asked me where my pain is located most of the time... i showed him this spot on my right side of my lower tummy and he asked if he could have a feel of my tummy. He pressed right on where my pain is usually located and worse during my period and it was pure agony!

He told me that this was my appendix and that I might have chronic appendicitis but he said that it also sounds that I have gynaecological issues anyway given the other symptoms I presented to him (painful, heavy periods, painful sex, etc...). He told me to ask the hospital that did my lap if they checked my appendix at my follow-up appointment as my surgery notes on the system does not say anything about it and take it from there. He also mentioned getting my Mirena coil removed as it might not agree with me and cause me even more pain which I will probably do after my follow-up.

Anyway my whole point is after that appointment, which gave me some hope on potentially getting some diagnosis, I went home and did a bit of research as my appendix pain gets worse with my periods so I looked at how both could be linked... I stumbled upon Endo of the appendix which mimics appendicitis symptoms and according to several journal articles it is super rare and therefore not always diagnosed by routine diagnostic lap, most of the time it comes back positive for endo after the removed appendix was sent to pathology for analysis...

I was wondering if any of you has Endo of the appendix or have heard of it? If so, which symptoms did/do you get?

Many thanks in advance! xx

[Nessa_G]

I had to have my appendix removed because of endometriosis. While I was going through the diagnosis process I had a CT scan. The results showed a mass where are my appendix was supposed to be. My doctor actually asked whether I still had my appendix because he could not see it. I ended up having a laparotomy and the doctors removed my appendix. As it relates to my symptoms I didn’t have daily pain but I experienced pain in my right side during my period and intercourse.

[MaloushkaPat in reply to Nessa_G]

That is so interesting as my very first symptoms were pain on my right side during periods and after sex too, it kind of just escalated when I went off the pill a year ago.

Thanks for your reply I'm probably going to do a bit more research x

[Starstellar7]

I had right sided pain several years after having an endorsement cyst removed. Turned out I had endo on my appendix, so they removed it.

I had intermittent right sided pain that felt like a very deep stitchlike pain. Worse before/during my period. I still get some twinges in this area so it could be adhesions/right ovary now. I was also very feverish on and off and felt pretty terrible. Initially they thought it was a grumbling appendix.

Best wishes.

[MaloushkaPat in reply to Starstellar7]

grumbling appendix is what the doctor mentionned to me yesterday but it was interesting that he said that it looks like i have also gynea problems despite the lap not finding anything, given my other symptoms, I am just trying to put everything together at the minute

The very deep stitchlike pain is what i feel, I feel something is twisting/cramping at the same time and it's intermittent too (it just happens to appear every day now). I feel ill before each period and wander if it's linked too! x

[Starstellar7 in reply to MaloushkaPat]

The twisting pulling feeling is probably your ovary. I used to find if I moved suddenly, or turned over I'd get that.

I guess you need to think about if you want to try and control it with visanne/the pill etc or go for a surgery. If the pains respond to hormones it may well be endo. I was on the pill (Yasmin) for years after the cyst came out feeling very well. You can tricycle or longer with visanne (if you can get it) and no periods! ) That might cut down pain/discomfort.

You should also consider fertility. Xx

[MaloushkaPat in reply to Starstellar7]

Thanks for the advice! I've been on the Mirena coil for 7 months now and I feel it finally started to kick in the last few weeks as the pain appears less often but is still at its worse around my period... I do feel there is something wrong with my appendix though so I might consider getting it out anyway if I have the possibility xx

[Ceeves96]

Hi lovely! I’ve just came across this thread searching for endo/rumbling appendix and I saw it’s about a year old. I’m not Sure if you’re still on here, but if you are. - would you be able to give me an update of if this was what you had?

My doctors are useless and telling me it’s all in my head. Had a laps last week which showed up nothing but now concerned they didn’t check the appendix as my symptoms match up well.

Hope you’re feeling better xx

[MaloushkaPat in reply to Ceeves96]

Hiya! I am still on here!

Had a lap in September which showed no endo but I did have adhesions near my appendix. They were removed but my pain is progressively coming back since January...

I went to the GP last month for an unrelated stomach ache and rumbling appendix was mentioned again even though it was apparently healthy at the lap in September.... So god knows really!

For now I have changed my diet and swapped to a vegan one and try to o work out when I am not too much in pain to help myself as much as I can. I am also keeping track of my pain and symptoms and plan on going back to the GP in a couple of months if things don't improve!

It might be worth asking your GP to see the operation report. I got one after my last lap but my GP also got a much more detailed one stating every thing they checked!

Good luck!! Xx

[Ceeves96 in reply to MaloushkaPat]

Thanks for your advice! I’m so Impressed at how you’re tackling your pain, I hope your pain stays away.

Thanks so much for replying to me I really appreciate it - I’ll see if I can get a copy of my medical report xx