Hitting desperation point - so frustrated I could cry! My symptoms have NOT gone away. What can I do now?

[Scooteeder]

Apologies in advance if this sounds like a "rant"... but I really do feel in need of some advice. I'm having somewhat of a rotten time at the moment, symptom-wise, but I feel I'm not being taken seriously, all over again. I'm at a loss as to what to do now...

As some of you may know, I have Endo, which was finally diagnosed in 2011 after YEARS of misdiagnosis, and being "fobbed-off". I feel that I had to fight SO HARD just to get a correct diagnosis, and treatment; and it really eroded my faith in Doctors and medical staff. It's not at all pleasant, when you are experiencing untreated Endo symptoms, and nobody is listening, or trying to help!

After I finally got my diagnosis, I ended up having 4 lap surgeries. My first was a laser ablation, and I was discharged from Gynae (not Endo specialist) services not long after it - having been told ALL my Endo had been removed. I then had at least 3 episodes where I ended up at A&E (via ambulance!) in excruciating pain. The Doctors (being at the same hospital as my original Gynae) all acted really shifty, and never wanted to discuss Endo. They kept trying to say maybe it was "muscular", or "psychosomatic", or "had I puled something?". I'd just get sent home with painkillers!

I did a LOT of research on-line, and found a nearby Endometriosis Specialist centre, that I demanded referral to, in late 2011. I had a 2nd lap in December 2011 that showed that ALL my Endo HAD NOT been removed! I've since had TWO further laps - including a radical excision of deep Endo from utero-sacral ligament!

I STILL feel "fobbed off". I've NEVER been told what stage my Endo was/is. I've NEVER been fully told where it was/is. When I've been shown photos of my Endo taken during surgery, they are always different ones at different appointments. So, I know there must be LOTS of photos; so just HOW MUCH Endo was there? After my most recent surgery in March of this year, I was again told ALL my Endo had been removed. But then my Specialist added that he could not guarantee it wouldn't return!

So, HOW do I know for sure that it IS all gone? Especially as I am now nearly three months post-surgery, and I STILL HAVE SYMPTOMS THAT ARE EXACTLY LIKE MY PRE-SURGERY SYMPTOMS. I have persistent low back pain, worst on right side. Pain at the low front of my pelvis. My periods remain heavy and clotty. I have bloating (woke up this morning, and the EXACT skirt I fitted easily YESTERDAY now pinches) - my stomach feels rock hard, and looks swollen. I am peeing LOADS (I'm keeping a diary of this at present - yesterday, for example, I went to have a pee 16 times in a 24 hour period!). I STILL have diarrhoea first thing in a morning, which is worse during my periods. I am still fatigued, and feel "run down". Today, my abdomen and back feel really tender - the pain is griping, constant, throbbing and makes me feel a bit sickly. My husband says I look pale and tired!

I feel like if I go back to my G.P. or Specialist, I may be seen as "fussing", as they are convinced my Endo is "gone". What the heck can I do? I am still being seen by a Gynae-Urology Specialist, and have tests in 2 weeks time. Should I tell them all my problems?

[Dillweed1]

So sorry to hear you are still having pain. I think you should definitely get referred back to the endometriosis centre. Have they given you something to ease your periods like the mirena or pill? It seems like there is no end to this disease at times. Sending you a hug. X

[Brownlow]

Hi Scooteeder,

Sorry to hear this. Just wonder if you could bring your husband along to the appointment to back you up and refuse to accept any fobbing off or 'psychosomatic' labels? I do think you should tell all of your symptoms and demand diagnosis and targeted treatment that is not a painkiller.

Sending you big hugs. xx

[wp22]

You sound exactly like me..... I could have written your post. I too have been told 3 times my endo has all gone, when I know it hasn't. If it had all gone then why do I still suffer endo symptoms??? My first gynea told me it had all gone then a few weeks after my lap I was at my gp,s and read the letter stating that he had left a load of it on my PoD. 2nd time I was told (2nd surgeon) he said he had cut out the endo on PoD. Few months later as I was still suffering same old symptoms I had my 4th lap (3rd) gynea and he removed the huge PoD nodule 2nd gynea left behind. Now 3rd gynea told me it had all gone and I defo know it hasn't. I am suffering too many problems from my bladder and bowel. Ok I may not have loads and my symptoms are not as bad as they were before last op and I did have 7 weeks pain free, BUT they are back and slowly getting worse. I go tomorrow to see my present gynea who done las lap and feeling just like you, will he believe me that I am getting symptoms again, does he think it is still all gone... Tbh I am dreading it because it feels like round 2 and I have gone through all that last time (4 ops,first being diagnostic) and all for seems like nothing. I have another fight on my hands and am now on anti depressants because I am finding it hard to cope with it all yet again. X

[Brownlow in reply to wp22]

Hi wp22,

Sending hugs to you too. Good luck with the appointment tomorrow. Let us know how you get on. x

[wp22]

Ah thanks Brownlow, I will do. X

[Mabes]

I think maybe it's a good idea to request a copy of your medical file/notes so you can see exactly what's been done. It's really wrong IMO that no one is telling you this information.

[wp22]

Hey Brownlow,

Went for my follow up and told him I still get cyclical pains, but not as bad as before my last op. He sent me for a ultrasound as he was talking about adenomyosis and as I am due on today it is the best time to do the scan to detect it. The radiographer was so lovely and told me everything she could see and said she doesn't think I have it, or anything sinister. I went back to see gynea and he looked both at MRI results and scan and agreed I don't have it. I was sooo relieved, but the I do have fluid between my bladder and womb, he said some women when they are due on have this, but tbh most of my symptoms at the mo are coming from my bladder and I think it's endo. My bladder has been on fire all week and I can't stop peeing. Plus he said I have a small cyst on my left ovary left over from ovulation, so nothing to worry about. I will just have to take the good news for now that I don't have adenomyosis, if I did I would have been devastated right now. X