Diagnosed with endo, but now my symptoms aren't from endo?!...

[stealth19]

Little bit of a rant here...

I was diagnosed with endo in April after my first laparoscopy. Finally had my follow up appointment with my surgeon today and I'm feeling a little bit confused and angry - back to square one!

I told him I'd had no relief since the surgery, having experienced daily period pain, constant headaches, irregular bowel movements, stabbing pain in my side, fatigue, and anxiety. Basically, all the symptoms I had before my op. My period was also unbearable but I was expecting my first one to be pretty painful.

Anyway my surgeon has said as there was only minimal endo, and it's now all gone, my symptoms can't be the result of endometriosis. I don't know whether to believe this and attempt to 'regulate my bowels' by increasing fibre and drinking more water, as my surgeon advised, or assume that it's still the endo.

Has anyone ever experienced this? I trust in him as he must have seen many women in the same situation, but I find it hard to believe I have anything else wrong as my symptoms are textbook endo! Any advice would be appreciated xxx

[JennieJo]

Feel so sorry for you. If it feels like endo again it could well be. After I had my laparascopy my symptoms returned within months and it turned out I had chocolate cysts developing on my ovaries again (with me I thought the stabbing pain in my side was a symptom of cysts). If the symptoms don't settle, maybe see if you can get a scan to check for cysts. Is your GP sympathetic so you could work out a new course of action?

[JennieJo]

Just had another thought, there's always a possibility of adenomyosis in your womb which probably wouldn't be detected in a laparascopy. When I had a hysterectomy about 8 months after the laparoscopy it turned out I had adenomyosis as well as more endo and I'm pretty certain it had contributed to my heavy periods, pain and fatigue after my lap.

[EmmieRose]

Hi, this sounds so familiar to how i'm feeling. I had a lap last October for mild endometriosis and my pain has been gradually returning.

After I had my surgery, the surgeon actually told me most of the pain I was experiencing was due to my IBS seeing as the endo was pretty mild but I know for a fact that the pain I was feeling (and now experiencing) was not IBS related. Doctors don't know how you're feeling- they can only guess so if you feel there is something wrong then it's worth stressing this to a doctor. I always feel that the endo pain is exactly like period and ovulation pain and if the issue was with your bowel it would feel different. That's how I distinguish the two. I actually feel like the surgeon missed some of my endo so that could be a possibility with you or like JennieJo says- there might be another issue undiagnosed? You may also still be healing as it took me a few months to feel any better. It would still be worth trying to increase fibre and drink more water to regulate your bowels as constipation obviously doesn't help bloating and fatigue but if your pain persists it's worth pushing for further investigation with your doctor. I hope you feel better

[stealth19]

Thank you both for your replies!

JennieJo, my GP is lovely but was reluctant to refer me to a surgeon for my lap, as she was very sceptical. The only reason she did (I presume) is because I complained to the surgery after they misdiagnosed my anorexia AND endometriosis. It also doesn't help that I'm young (18) and they haven't taken any of this seriously.

I've heard of adenomyosis but I've had several ultrasounds and nothing has ever been mentioned. How is this diagnosed?

EmmieRose I completely agree! I occasionally have other pelvic pain that I assume is my bowel, but as any other endo sufferer - I KNOW when I have period-like pain! I'll take his advice and give myself more time to recover from the op but I feel exactly the same as before my op, so surely this is endo!?

xxx

[EmmieRose]

The thing with endo is that it can come back the first period you get after the lap (which is what I think has happened to me.) Maybe you were still feeling pain from the recovery and when you had your period it may have started to come back. I hope i'm completely wrong about this as it's horrible to go through surgery without your problems being solved. Anyway, as you say- give yourself a bit more time to recover and try to take your doctor's advice and if things don't improve you will know it's not your bowels or whatever so the doctor should take you more seriously. I think you will know in yourself whether it's the endo so it needs to be explored further if things don't improve. Take care x

[jay379]

I also had no improvement after lap and had constant headaches, fatigue, nausea & pain. Was given a course of Provera with no effect and finally had Gnrh for 6 months after which I had a marked improvement for several years. Hav just had another 6 months of Gnrh injections and have found my symptoms have eased again- seems to be only treatment of all I've tried which has eased my symptoms.