Can Endo return after two years?

[Cat75]

Hi all i have just had my appointment with the gynae doctor at hospital because i,ve not been coping with the pain and the doctor was adamant that the problem is my bowel as i also suffer ibs, i do not agree with this. I told her that i know the difference between my ibs pain & endo pain but she said that after my last laparoscopy all the endo was gone. I am slightly confused about all this as i was told endo definately returns at some time. Anyway the doctor has agreed to do an internal scan. Also i have pcos and the doctor said they do not cause pain which i slightly disagree with. Please can i have anyone,s thoughts abt all this as like i say its confusing to me, thanks x

[Vicky31]

Hi

I was in the same position had my surgery after 6 months of zoldex then the coil fitted to try and keep my endo at bay. Throughout the next 2 years I had pain on and off then lots of pain. My partner convenced me to go back to the gyne as I had been discharged due to the sucessful op and the coil working to stop my periods. Thankfully I listened to him. The gyne was not convenced it could have grown back so fast as it had only been two years. He gave me a ultra sound external and internal but it showed nothing. I knew like you the difference between my pain and knew it had. I was also now suffering with water infection syptoms but no water infections, so was sent for a cysocolpy. Which came back as irritable bladder sydrome. My partner was strong for me with the gyne and would let him palm me off. So he agreed to do an investigive lap. Even on the day of the procedure my gyne was still preparing me that it had only been 2 and half years by this point since I had my last surgery and the chances of there being visable endo for him to remove would be slim. He explained that it didn't mean there wasn't endo growing there but he could only remove what he could see. The op took longer than anyone thought and he was in there a long time (and this was just looking not removing). The results was the endo had spread everywhere!!..he was shocked and has agreed to operate to remove. I've also had to have an MRI on my bowel as the slight endo I had growning on there that was left has got really bad. He has told me that I've just got an agressive type which doesn't seem to respond to treatment at the min.

What I'd say to you is, its your body you know your body best. If your gut tells you its back than stand your ground.

Good luck x

[KathleenLucich]

I'm so sorry for your pain, Cat. The answer to your question sadly is yes, it can very well be Endo. In fact that is quite common as most doctors throughout the world really do not know how to treat it properly, so it does return again and again and again if not treated correctly. I recommend finding a specialist - not just a gyno - an endo specialist who has the specialized surgical skills to help you.

To your health!

Kathleen

[Chrissie66]

Hi Cat

It probably doesn't feel like it, but you're lucky if it's taken two years to come back

What is it with doctors who are determined to pin it on our bowels? I was hospitalised with pain once - beware, this is getting into Too Much Information territory now - but whenever I am in endo pain, I get diarreah. When I got into hospital I was writing around in the bed and the young doctor who came to see me tried to tell me it was constipation. I knew it wasn't from the evidence of the past 24 hours, but she was adamant. Until she Investigated Further (and that was a shock, didn't warn me THAT was about to happen!!)

Oh, and endo won't show up on a scan unless you have endometriomas (endometriosis cysts on your ovaries) so when your scan comes back clear, as it probably will, don't let her say "I Told You So" because it will mean nothing.

I know it's hard arguing with doctors but as you rightly said, you know your own body, and you can tell the difference between the pain of IBS and the pain of endo. Stick to your guns with this.

Good luck, and lots of love

C xxx

[Chrissie66 in reply to Chrissie66]

Sigh... I wasn't writing around on the bed. But I was writhing....!!! x

[kyla78]

Endo returns at any time, Ive been ok for two years but am getting pain again, I've heard of it coming back sooner with some people or longer with others

[Cat75]

Hi Vicky31, KathleenLucich, Chrissie66 & Kyla78, thank you all so much for all your feedback on my dilemma. By the sounds of what u all say i was right in trying to argue my point with the gynaecologist and i will continue to try & do so. I too am not expecting this TVS ultrasound to throw any light on finding a problem as i have had one before and it only threw up my polycystic ovaries. Chrissie66 it sounds like you,ve had a battle with the doctors yourself so if they try and send me away without doing anything further for me what shud i do next??? KathleenLucich, thank you so much for making me realise that its not me going mad & that as i originally though my endo is back. Also thank you so much for the name of that endo specialist i will be contacting him shortly & let u know how i get on. Vicky31 i am so glad that you stood your ground with the gynaecologist and are now getting some answers, best of luck with your operation and let me know how you get on.

[Cat75]

Best of luck to you all & hopefully pain free days soon xxxxxxxxxx

[LittleMissManx Moderator]

Hi Cat

I had a hysterectomy in January 2011 for endo as well as adenomyosis. Due to having no womb, fallopian tubes or ovaries left I told myself that the ongoing pain I was having post-op couldnt be due to endometriosis. But by June 2012 it was obvious things werent right and I saw my GP who referred me to gynae. I had moved house so was being treated at a new hospital and in December 2012 I had a diagnostic lap where endo and ovarian remnant tissue were found. Either <or both> of these could have been causing my pain. Both were excised during the lap and I am now having the Prostap injections to keep my body in a menopuasal state and hopefully free from endo.

All this treatment seens a bit bizarre to someone who has had a hysterctomy but I am willing to try almost anything to remain free form the pain and discomfort of endo.

Good luck to you in your step

Caroline, x

[Cat75]

Hiya Caroline (LittleMissManx), thanks for sharing your story of having endo with me. I had already heard that even after a hysterectomy you can still get endo growing back as i have asked if i can have a hysterectomy to ease my symptoms and the gynaecologist said that having one would not cure the endo and she is reluctant to do one for me because of my age, i,m 37. My argument every time is that i absolutely dread my periods when they eventually decide to rear their heads and i have already been told by a fertility specialist that i will never have any children unless i went for private ivf which i just haven,t got the money for so in the end i have slowly come to terms with the knowledge that motherhood just will not happen for me hence why i now do not mind the option of a hysterectomy. I have even asked about the medication you can get to put me into a false menopause just to see if it,s suitable for me but to get this i now have the fight to get the gynae to listen to me that i definately think my endo is back.

Many thanks again hun and good luck for your endo future.

Cat

[LittleMissManx Moderator]

Hi Cat

I had the hysterectomy after trying the injections which out you into a false menopause. My gynae always strongly advised his patients to try these before making any decision re surgery. I think if you didnt have such a good result with them then there would be little point in going through with the operation.

I hope you manage to try the injections as it should give you some indication of how you will be after surgery. On a personal level I felt great after trying them and felt like my old self once more. Living and coping with endo is an ongoing trial of new medication and different treatments and the injections are part of that process.

Good luck with your next appointment and fingers crossed your gynae will listen to you.

Caroline, x

[Cat75]

Hi LittleMissManx (Caroline), Thanks for your reply, i think i will keep trying to persist on trying those injections as i think they will help in the long run, it really is a complex life trying to live with this disease. I will be in touch again no doubt after my next appointment on 19 July, just hope i will have better news for you all lol x

Thank you again hun and best of luck for your future.xx

[lmcghie]

HI CAT.

GOSH I AM SO GLAD TO HAVE LOGGED ONTO THE SITE TODAY..

I LIKE YOU ,HAD A TOTAL HYSTERECTOMY 2 YEARS AGO.AGE 45.

I NEVER TOOK THE RECOMMENDED HRT,AND HAD A TERRIBLE MENOPAUSE.

ANYWAY THE LAST3 MONTHS THE PAIN HAS BEEN AWFUL.WENT TO DOC AND HE

SAID IT PROBABLY WAS IRRITABLE BOWEL I DO NOT THINK SO..IT IS THE SAME PAIN

I HAD BEFORE MY OP..IT STARTS IN MY BACK PASSAGE THEN WORKS INTO MY

PELVIC AREA..ANYWAY THE PAIN GOT SO BAD DURING THE NIGHT IT HAD ME IN

TEARS.I HAVE JUST FINISHED WORK TODAY AND AM IN BED WITH A HOT WATER BOTTLE AND I HAD TO GIVE UP ONE OF MY PART TIME JOBS BECAUSE OF THE

PAIN SO NOW HAVE THE ADDED MONEY WORRIES.MY PARTNER OF TEN YEARS

IS BRILLIANT AND HE IS COMING TO DOC NEXT WEEK WITH ME AS HE SEES THE

IMPACT THIS HAS ON ME..SO SORRY TO GO ON BUT LIKE YOU I WISH THESE PEOPLE WOULD TAKE THIS SERIOUS AS THEY ARE NOT THE ONE WITH THE PAIN.

WISH IT COULD BE A DISIBILITY THEN US WOMEN WOULD NOT HAVE THE FINANCIAL WORRY AS WELL AS THE PAIN..GOD BLESS AND I WISH YOU WELL..

[Cat75]

Hi Imcghie, thank you for sharing your experiences with me but i haven,t had a hysterectomy i want one but they keep refusing me i think you got me mixed up with Caroline as shes had one. Sorry to hear you,re having a rough time after having yours, sounds like your gp is not listening to how you feel which is terrible as it is your body after all and not his/hers and you know your own body and you know the difference like me between your bowel and endo symptoms. I,m afraid you,ll just have to persist with this argument as i will have to with my gynaecologist. As for your job situation i was in a similar position some years ago i spent half my time too ill to even get into my workplace, eventually my union advised i took ill-health early retirement if offered and it was so i took it. I was also advised to apply for disability benefit so i did it has been a hard slog and have had to face a panel firing questions at me about all my heath conditions but in the end i got it. Just go to your nearest citizens advice office and they will help you and all i will say is to gather all evidence to help your case e.g. hospital letters, doctor,s report, hospital appointments etc. Good luck hun and keep putting the hot water bottle on your tummy for some relief i swear by mine i don,t know what i,d do without them, i have one on my tummy and one on my lower back, if that doesn,t do the trick i know i have to go in to hospital for oramorph. Stay in touch luv and let me know how u get on.

xxxx

[beatingendotogetha]

Yep!! It's not curable, even after my operation it still came back.. I defo don't understand how your doctor could be so adamant that it's your bowel considering you've had a diagnosis previously and an operation.. perhaps make a follow up appointment in a few weeks and insist that you're referred for a scan for your piece of mind.