Hi I am new on here and have been looking for answers. Your opinions may help me!

[fee43]

I once described my symptoms to a friend and she said it sounds like Endo, but I didn't give it another thought, But after a US, a CT, a colonoscopy, numerous blood tests and a Cystoscopy (bladder) and all coming back clear. I turned to looking at this. Mainly now because my GP is treating me like I am wasting their time and they have no sympathy at all and don't want to help. Constant symptoms are extreme tiredness and nausea, random stabbing /burning pain in pelvic floor area and up rectum up to lower back, also feeling like pelvic floor is swelling and heavy and like a ball between my legs, joint pain in knees and elbows (bad lifting stuff and walking down stairs). Heavy periods, pain with both doing a wee (also have blood in wee) and having a bowel movement, (so bad I thought I had enormous piles or tear!) Diarrhea, going to toilet more. Loss of appetite and weight loss. This is having a major impact on my life and I am starting to get so depressed as I can't function normally at all. Tiredness and nausea the worst! Doctors are worse than you can imagine.. Do you think it sounds like Endo? and where do I go from here!? Advice please.. I don't know where to turn..thanks

[Impatient]

Switch Doctors. Yes it sounds very much like advanced endo. Your GP is not taking the multitude of symtoms seriously so this forces you to fend for yourself.

Look around for othr surgeries in your locality - online their websites will usually say what their Doctors specialise in. Aim for one with a Doc specialising in women's health issues.

Explain the huge list of symptoms and that you are now at the stage where after all other tests have proved that nothing else is amiss, and it very much looks like endo -- that now you need to be referred to an endo specialist gynaecologist.

To be honest - even without a diagnostic laparoscopy to diagnose you - I would suggest you by-pass the regular gynaecologists and ask for a referal to one the accredited endo centres, because the symptoms you are describing are indicative of long ignored endo - and that will in all probability require more complex endo surgical skills than the average gynae surgeon can manage.

The list of the accredited endo centres and the provisional ones are on

bsge.org.uk/ec-BSGE-accredi...

and

bsge.org.uk/ec-BSGE-provisi...

Another blood test you could ask for from the new Doc is a CA125.

This can show elevated for endometriosis - and could speed up you getting and appointment. It's not an expensive test. It is also not 100% reliable for endo and can return a normal result even if you do have endo - but a higher result will be taken more seriously and adds weight to your request for surgery.

Very best of luck - and keep pushing to find a sympathetic GP. It's not easy - so many of us have battled the dinosaur docs who are clueless about endo or in denial about endo for years and years, but it really makes the whole world of difference to find a GP that understands and knows about endo and supports you through the battle.

They are out there - but you do need to do your homework and find them and then transfer to their care even if it means travelling a few miles more for appointments.

It is still taking on average 7 years for endo ladies to be taken seriously enough to get a diagnosis - in many cases much much longer than that. (29 years in my case)

At least you do know about endo - and everything you describe is pointing to endo, so next its up to you to find a sympthetic medical person to listen, and keep on at them and on and on. Sit down strike in the surgery if you must, and do give them the details of your nearest endo centre and insist on getting referred to the endo centre.

The process of getting an appointment at an endo centre is a lengthy one - so try and get the ball rolling in the next couple of weeks. Perhaps book to see your old GP and give them one last chance to refer you, and if they refuse, then take your business elsewhere and tell them why you are doing so. Once you are sorted out with and endo centre and get a diagnosis and surgery - then file a complaint against your old GP, or contact the local press and shame them. Hopefully a little bad publicity will buck their ideas up and save other local women going through this.

over 10% of all women have endo - If they have 3000 patients on their books, half are women 1500, and 10% have endo - that's 150. It's not a rare condition. You won't be their only patient not being taken seriously. And this is such a big problem across the UK.

[malc12]

You poor thing! Make a fuss. My endo wasn't diagnosed for 10+ years despite multiple trips to the doctor, ultra-sounds, bladder tests etc... Like you I was made to feel bad and that I should just get on with painful periods. After I had been married for years and not getting pregnant, I was finally referred to a gynae who found severe stage 4 endo, bowe, bladderl endo, blocked and infected tubes, adenomyosis, multiple cysts and so on. That was 6 years ago and I have had 4 laparoscopies and am now facing a full hysterectomy and bowel resection. Sadly I haven't got any children. If they had caught it earlier I may have been spared years of pain, debilitating tiredness, thinking I was going mad and possibly this forthcoming surgery. You know yourself when something is wrong and you deserve the proper treatment. Get a list of the symptoms of endo (of which you have loads), statistics about length of time it takes to diagnose, go to your GP and demand that s/heat least rule it out. All the best.

[Hidden]

Hi fee33,

Id firstly like to say i have not been diagnosed with endo, but just by the way you have described your symptoms has sounded so similar to what i have been going through the last few months its made me start thinking about giving my G.P some pressure to get myself checked out with a scan or something similar A.S.A.P

The best advise i could say and its probably something that i may have to do myself is try going into a NHS, walk-in or they can also be known as urgent care centres as these place usually have fully qualified NHS nurses or doctors who can either refer you to the necessary people or give you a prescription to delay some symptoms you may have which cause you discomfort.

I hope this helps, but id like to thank-you for your post as you may have just help my mind to go in the right direction.

[Scooteeder]

Hi,

This goes out to "Abenaa", too...

I am utterly in agreement with "Impatient" and "Malc12". This is NOT an issue that you should permit to be "swept under the carpet". As a rule, symptoms tend not to go away of their own accord. In all likelihood, they will either remain a nuisance, or get worse, the longer they are not attended to.

I cannot get my head around the fact that poor "Impatient" was not diagnosed with Endo for @ 29 years. That is truly APPALLING! I thought I had put up with MORE than enough, having waited over 9 years for a diagnosis! Anyone who can live with symptoms for 29 years, and not get the right answers must truly have the patience of a Saint (and one heck of a lot of resilience)! As you can see, women with Endo suffer needlessly for YEARS before getting an accurate diagnosis; so it is important to get the ball rolling as soon as you possibly can.

It does sound as though your symptoms could well be related to Endometriosis. However, just to add to the already comprehensive answers above, there are plenty of other Gynae conditions out there that may also cause similar symptoms. Things such as Adenomyosis, Fibroids, or Pelvic Inflammatory Disease could well cause symptoms not unlike those that you have mentioned - and it is WELL worth pressuring your Doctor (s) to check you out as THOROUGHLY as is possible.

Sadly, Gynae problems do not seem to be given the same care and attention as many other disorders. Maybe that is because they affect predominantly women? Maybe it is because they are not exactly "glamorous", and are the sort of thing lots of people would prefer not to talk about? However, the reality is that they affect significant numbers of women, and cause unpleasant, debilitating symptoms. Put bluntly - you should not have to endure ANY illness that affects your quality of life, without receiving appropriate support, care and treatment.

I agree that it would be well worth asking for referral to a Specialist, as it sounds like you have already exhausted many of the tests available to more "standard" medical practitioners. Endo is a frustrating disease, because it can present with symptoms very similar to those caused by a whole host of other disorders, symptoms that may easily be confused with IBS, Cystitis, Infections... However, in your case it sounds like you have already had negative results from tests that would generally tend to rule out many of the illnesses that present with similar symptoms to Endo. Similar to you, I went through a Colonoscopy with Biopsy, a Hysteroscopy, D&C... things like that. Unfortunately, in my case, 2 reports that suggested I had Endo were either missed, or ignored - which probably lead to a far longer wait for diagnosis than was necessary! In your case, the negative results from such tests would tend to suggest that you, and your Doctor(s), need to start thinking along new lines as to what may be behind your symptoms - and it makes perfect sense to include the possibility of Gynaecological problems in the "suspect list".

DO consider the advice that has been offered to you, and DO try to talk things over with your Doctor(s). Where you have concerns about your health, it is always prudent to act on those concerns. IN NO WAY AT ALL are you wasting anyone's time. SURELY it is better to take symptoms seriously, and to seek assistance, than to sit back and allow a potentially debilitating disease to progress untreated? I am sure your common sense will tell you what to do.

Here's wishing you all the very best, and good luck in getting things sorted out. There are always women here on this forum who will listen, share experiences, and offer their advice if ever you feel you need it. Don't ever feel alone, or foolish... there are people here to support you.

Take care & best wishes,

Elaine.

[Impatient in reply to Scooteeder]

There are ladies on this forum kept waiting even longer than me. There's quite a number in the over 25yrs waiting club. That is to say endo symptoms from the beginning of periods and getting diagnosed after age 40. Hopefully it wont be like that for younger generations with the endo centres spring up all over and the wonderful interwebby. Times are changing - but we ladies have to force that change by battling hard for the right help when we need it.

[Scooteeder in reply to Impatient]

Blimey! If you put it like that, then it took me 28 years to be diagnosed! Hmmm... I think I prefer to stick with the 9 that I tell myself it was! I sure did have problem periods in my teens - but Endo probably wasn't even heard of then - let alone considered (I'm 43, diagnosed age 40). I just started counting from when my symptoms were so blatantly obvious that a monkey with a textbook could probably have spotted they were Gynae in nature!!

[Impatient in reply to Scooteeder]

Ha Haa Welcome to the Club !!

Getting serious for a sec, I started my periods 1week on 1 week off and very heavy with tremendous pain and pain at ovulation too. Mum took me to the Doc when I was just turned 14.. I called my periods snow-white in my diaries and it's just page after page after page of period problems for years, so that was the 1st time something should have been picked up on but wasn't - and that's as far as I am concerned when I 1st realised something was very wrong and not normal and nothing was done.

When I was about 18 was probably the monkey with a text book visit to the GP, but I am not ignoring the deep rooted memories of the years preceding that when at school and college, and all the gushing floods through my clothes and bottles and bottles of paracetamol I got through - luckily they were sold by the 100 for 99p back then. I did use to have problems buying them in bulk, because of my age, and my GP wrote a letter for me to show to the chemist to authorise me being sold paracetamol in bulk because I needed so many.

Alarm bells and sirens should have been going off at that point. Normal women do not need 4 paracetamol every 4-5 hours throughout a period. Far exceeding max daily recommended doses. My GPs (plural) did not think it nything but 'normal'.

If only I knew then what I know now. If only they knew about women's health too. What a waste of my life of so many lives when we are not listened to, when we do seek help.

[Scooteeder in reply to Impatient]

Yes, I can identify with what you say. I was brought up in a "deeply traditional" Catholic family, so a) wasn't encouraged to talk about periods as a teenager, and b) when my old GP told me painful periods were "normal", I believed it. I mean, you don't really question WHAT LEVEL of pain is "normal" at first! I just accepted the fact of being started on the Pill as a teen to "regulate my periods", and that was it. Any symptoms (I got horrendous migraines, and lots of abdominal pain) I just dealt with via painkillers - mood swings/PMS were just put down to being a "badly behaved teenager" by my parents!

I'd say I only really began to question what was wrong as an adult - long after I'd left home and moved in with my fiance (now husband). The things that probably "alerted me" were a return of horrendously heavy and painful, irregular periods, accompanied by bowel problems - and inability to conceive (which, as I've previously pointed out, my Doctors just fobbed off as "anxiety"). I remain baffled to this day as to how "anxiety" makes periods heavy and full of clots - and causes water retention and nausea around menstruation! Still... is THAT'S what a trained "medical professional" wants to think...

Maybe there SHOULD be some sort of "club"... a "Survivors Club", along with it's own medal? We'd wear it a bit like the "Victoria Cross"... for "valour"! You know... the "I survived a dodgy GP and delayed diagnosis, and I'm here to tell the tale" club and medal? Though I suspect it may need a slightly more catchy name!!

[fee43]

Thank you all so much for your brilliant answers and advice. You are all so right.. So sorry for all the pain etc you have all been through and are going through. If it is Endo I have I don't know how women can cope for years.. I started to feel ill last august and I quite literally now would, if someone said I all my symptoms would go away if I chopped 3 fingers off, I would do it in a breath.

I was feeling hopeless and full of confusion and thinking I was going mad, you have all helped to make me feel stronger to make more positive steps to getting to the bottom of this. I had a terrible day today at work where i was feeling so sick i couldn't eat and so tired it was quite overwhelming. I felt like crying all day! I have been blessed with a son (4 years old) (IVF) and I feel so depressed that I cannot do all that I should be doing with him because I haven't got the energy!!

The last doctor I went to see must of thought some more about how she treated me and I got a phone call today to ask me to go in for more blood tests.. not the best news but at least I am getting somewhere..maybe...I don't know yet what they are, but going in in the morning.

Malc12 you are so right and I should get them to at least rule it out. Impatient and Elaine thanks for your brilliant advice - I have been through all the IBS, Cystitis, Infections.. etc..Colonoscopy with Biopsy etc to find nothing..its because of this the doctors think I am some kind of nutcase. Abenaa thanks for saying thanks for my post it was lovely to say that and I hope it has made you think more about getting help for your symptoms too..

One thing I will mention is I was eventually treated for what they thought was a possible urine infection and I took trimethoprin antibiotic for 10 days, I felt much better after taking this for about a week - like a new person, and then reverted back to all my symptoms again. Can't figure that one..? maybe I am getting an infection too and it helped that? Currently with all other symptoms I have a sharp burning pain, in the crease of my leg to my pelvic floor (right underneath) it almost feels like there is a ulcer/lump inside.. hard to explain.. Anyway thanks so much again you have all really helped me to push on.. take care fiona

[Northernmonkee1]

I have been consistently writing to my MP and he says he has passed it onto the health sec. I have asked about waiting times for diagnosis, the number of endo consultants and endo nurses vs demand. We all deserve better. Don't give up and we have to fight women's pain being trivialised. We know are bodies and we can't let anyone ignore that.

Take care and good luck getting the treatment you need xxx