I was diagnosed with Endo age 25 when my son was 3 months old by Stepping Hill Hospital in Stockport after having my second laperoscopy (the first was done at my local hospital Tameside General but they found nothing just the "pill injection didn't agree with me). I've been back and forth at my doctor's and hospital trying to get me to try different forms of contraception. So far the pill Cerrazette has been the best!! I was coninced by a doctor to go back on the Deppo as the pains were still persisting with the Cerrazette but currently the pain is worse and haven't stopped bleeding for 4 weeks now!! I recently went back to Tameside to possibly have another Lap...only to be told by the Gynae consultant that i've not got Endo, never have had it but i need to be tested for IBS!! Is it wrong to want a wecond opinion??
I don't and never have had Endo, possible... - Endometriosis UK
I don't and never have had Endo, possible IBS says my consultant...
I would absolutely scream for a new opinion. That gynaecologist is an incompetant fool.
Get a second opinion asap from a good endo gynae x
He seems to think because my Endo pain didn't stop when i was pregnant then i've never had it!! But i think it was coz one of his under consultants made a blunder with sending me for a scan (he left the scan form for the sonographer in my notes and it took them from 9th November til 25th Jan to inform me) so he was embarrassed so decided to tell me the other.hospital made a.mistake!!
Get another opinion! Like impatient says the dr is an incompitent fool!
I can totally relate to this, as I was diagnosed with endo when I was 27 and have been suffering worse so recently esp with nausea and bowel pains/upset. Been sent to a gastroenterologist who said it not endo causing it but IBS! They don't realise that endo can cause other symptoms and occur not only at period time! It is so frustrating and can understand your frustration with it.
I hope you manage find someone else soon who will actually listen.
Best wishes x
I would ask why I was told I had endo in the first place if I were in your position and what makes them say you dont have it now. It sounds like you are saying that a gynae who HAS looked inside you says you HAVE endo and a gynae who has NOT looked inside you says you havn't got endo.... seems a little like a money saving exercise to me....
Diagnosing endo needs to be done by an expert who knows what he's looking at. It makes me so angry when you are told by a surgeon who doesn't have enough experience that you haven't got endo.
I agree with Hilary - see a specialist. My recent gynae laporoscopy concluded i have no endo on my bowel - just elsewhere. Yet 2 years ago laporoscopy found endo on bowel - so what.....its just disappeared has it?! 'IBS my arse' is my favourite saying at the moment!!! I seeing endo specialist tomorrow x
'IBS my arse' is very apt. Fact is IBS does not exist, it's a catch all title given when no one knows what's causing a bowel problem, there is no such thing as IBS specifically.
And if you do have endo, then why not look first to endo and the adhesions from endo being the reason for the problem, certainly NEVER tell someone already disgnosed with endo that have miraculously been cured of endo without even checking. That's unforgiveable.
Ladies ladies....i seriously can't thank you enough for your support!! The consultant looked at the results of a scan i had done to see if i had ovarian cysts then listened to me saying how much pain i was in during my pregnancy (i was treated for SPD and guzzling 4 litres of coke a day...craving!!) and then spoke to the consultant who's clinic it was and he came out and told me i had no Endo whatsoever n i didn't have a gynae problem at all!! Add to this a mother who thinks Endo doesn't exsist as i'm the only family member with it and u can see why my depression is getting worse!!
Ah bless u Missymoo, my aunty had it until her hysterectomy so fortunately my family get it.....friends dont seem to tho - nor do GPs. It takes an Endo specialist to find it a lot of the time. C if U can get these things in writing and sue the b...ards!x
I was letting off steam to my GP about having been diagnosed with IBS for twenty plus years when actually I had endo and she said, "well you did have IBS. IBS just means your bowel was irritated, it doesn't explain why. The endo was causing the IBS."
Strangely enough, it was Tameside that spotted my endo, but there you go. They certainly didn't tell me the implications or offer me any further treatment, which appalls me now as I think I might have been able to have children if they had.
Anyway, you fight for that second opinion, but it may get you further if you don't fight the IBS thing but maybe pursue the 'endo as well as IBS' angle.
Best of luck. Please don't pay any attention to those who don't understand your pain, I'm the only one in my family too. It was very difficult having three sisters and a mother who all thought I was making it up.
x
I am sorry to hear about your experience, I was reasonably lucky (not to have endo of course) that a surgeon who operated on my ruptured appendix sent it for sampling when removed and it came back endo cells so organised my referral for gynae review and its gone from there so I already have a definite diagnosis without any further surgery! I have a fabulous gynae doc and she isn't an endo specialist but really interested in making women's lives better. You really need to find a good gynae doc and if necessary have cells sent for sampling. The docs are correct in that IBS is just irritation of the bowel caused by foods, endo, meds etc and so most endo patients have IBS even if dont have endo on the bowel! So yes you probably do have IBS but probably caused by endo and need to be seen again honey xxx
I spoke to my GP today and she's gunna help me with the second opinion. My Uncle had IBS right before he had colon cancer which unfortunately took him from us so i do want to get tested i'm just not getting the whole "never had Endo" bit at all!! My next door neighbour didn't know she had it til two years ago when she had her hysterctomy and theytold her she was stage 3!! Again many thanks ladies it's great to know i'm not on my own!!
I spoke to my GP today and she's gunna help me with the second opinion. My Uncle had IBS right before he had colon cancer which unfortunately took him from us so i do want to get tested i'm just not getting the whole "never had Endo" bit at all!! My next door neighbour didn't know she had it til two years ago when she had her hysterctomy and theytold her she was stage 3!! Again many thanks ladies it's great to know i'm not on my own!!
I spoke to my GP today and she's gunna help me with the second opinion. My Uncle had IBS right before he had colon cancer which unfortunately took him from us so i do want to get tested i'm just not getting the whole "never had Endo" bit at all!! My next door neighbour didn't know she had it til two years ago when she had her hysterctomy and theytold her she was stage 3!! Again many thanks ladies it's great to know i'm not on my own!!
I spoke to my GP today and she's gunna help me with the second opinion. My Uncle had IBS right before he had colon cancer which unfortunately took him from us so i do want to get tested i'm just not getting the whole "never had Endo" bit at all!! My next door neighbour didn't know she had it til two years ago when she had her hysterctomy and theytold her she was stage 3!! Again many thanks ladies it's great to know i'm not on my own!!
That is fab your gp is gonna help u to get a 2nd opinion! Hope that appointment comes quickly for you and I hope that it goes well. Totally understand where u r coming from in that yes it may be IBS of sorts but it is their attitude to the endo and how it cannot be that causing irritation and in your case that u never had it! when u had a lap which showed u did! x
Hi, I'm gonna throw the cat among the pigeons here. I had mild endo removed and was told I might have adeno too. The fact you still had pain whilst pregnant says to me that you have adhesions caused by the endo, they can in fact make the pain worse when pregnant! I had really bad pelvic pain when pregnant and didn't discover the endo until afterwards!! However.....I had a second lap where they found no re-growth and I DO have IBS caused by my hypermobility syndrome and I can tell you it is just as painful as the endo I had/have. I get really bad cramps, bloating etc all in my pelvis all of which gets worse when I'm on my period. I also have adhesions caused by an infection I got from the mirena coil!! I would get a second opinion but if they still say no endo then don't ever think IBS is not as bad as endo....I know it is, mine's so bad that just passing wind makes me cry sometimes 
good luck and I hope you get to the bottom of it xxx
oh i'm not saying i don't have IBS, i possibly could have as it runs in my family BUT i'm fairly certain i still have Endo. bloomin consultants eh!! hope you get better soon xx
I once went to a endo meeting where a well respected endo specialist gyne who teaches other gynes about endo and adhesions spoke. I recall him saying 'Before I start, IBS does not exist! It is a lazy diagnosis by many Gps to what is in effect an underlying gynacological problem'! Wow, that statement I will never forget. However, many Gp's still insist IBS does exist! If this is still an issue of confusion in the health service, then is it any wonder that we 'the sufferers are even more confused'.
Wow no way!! I shall definately get a second opinion x
Ok so been back to gp who has pretty much told me i may not be able to have a second opinion due to the "current climate"....too skint!!.....but has given me info for both ibs and endo. I have read ALL the symptoms it lists for both and it says to me i have endo not ibs!!! How is it so clear to me a non expert??
hi have you looked into Adenomyosis its found in the uterus xx good luck xx and keep pushing you have a right to be treated at any hospital
No...never heard of that? Will try it!! GP reckons Endo comes and goes....surely that ain't right??
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