Hi guys, I'm new to all this, just joined today and wanted to ask people how long they waited before they were actually diagnosed with endo? I have been in agony for nearly 4 years now (can't put a tampon up there without it feeling like being stabbed with a knife so sex has been out of the question), been desperately chasing the health service up thus having a multitute of swabs, blood tests and excruciating internal examinations but they can't find anything. Some doctors have suggested it must all be in my head or that my muscles can't relax but I know they are wrong and that I have endometriosis (severe pelvic pain, pain during penetration, pain in bowls). It feels like no one is on my side after seeing endless GPs and gyaenocologists. I'm starting to lose hope and don't want to live.
Losing the will to fight.: Hi guys, I'm new... - Endometriosis UK
Losing the will to fight.
I waited two years, but I was very lucky - I know the average time is 7 years or so.
I totally get what you mean, I had the same crap when I was being diagnosed. Lots of doctors doing tests that came back clear, and then them saying "oh well you're fine then" and I would have to say to "well I'm not, what other tests can we do?" Eventually I got a laparoscopy, but that took a lot of pushing from me, and I think I only managed it because I have such a strong family history of endo (maternal grandma, mother, little sister.)
Perhaps you should try and get a referral from your GP to a specialist centre? Endometriosis UK has a list on their website, I believe. You could also come to a support group, or call the help line - I've found both very helpful when I've been feeling really down about it all.
Please take care of yourself - you're not alone, and we're all here in solidarity xx
Thank you for the advice, I aksed my GP to refer me to a specialist but she said 'Even if I do, they won't be any quicker in helping you get a diagnosis than the NHS', how positve of her! However, I will keep pushing to get a laparoscopy. I think going to a support group would be really good for me right now as no one else truely understands this horrible condition.
Kind regards xx
I was 12 years ... in the last few years before my diagnosis I was told it was IBS and i stopped my meds against their advise to prove to them it was gynea linked ... I kept and still keep a pain diary to this day, you never know when it'll come in useful. For me telling the doctors "I'm in pain" didn't really do much, them seeing my charts which i turned into % shocked them into doing something.
You poor thing, 12 years is unacceptable, you are so strong to have kept going in search for answers. I'm sorry to hear it took so long, your perseverance is inspiring.
Hi Lunar,
I was finally heared and told that I might have endometriosis after 15 years of pain and struggling (I am 30 now)
I know how you feel..I saw many doctors and was told it's a stress thing and muscles stress and blah blah..till finally had a new GP and she is an amazing, understanding person, she referred me to an Endometriosis center and now I am waiting for my laparoscopy.
I agree with SarahMia about having a referral to an endometriosis specialist which will help a lot I hope.
Lots of love and blessings and I hope you feel better soon xxx
Gosh what a nightmare. Took me 7 years but having said that I was 15 when I first went to the dr with terrible ongoing symptoms, like you I could never use tampons etc. But my first op wasn’t until 20’s when I was finally diagnosed.
In your head - helpful and stupid! Doesn’t surprise me with some Drs though - sadly.
Keep pushing the GPs do not take no for an answer tell them you want to be referred.
Had everything you did.
Keep going you’ll get there honest. Keep strong x
It took over 4 1/2 years to be diagnosed and I had very good GP. GYN, Gastro docs listening to me. I first complained at a routine physical about my pelvic pain. My GP ordered an ultrasound..... found fibroids and an ovarian cyst.....will follow every 6 months....the third ultrasound, 1 1/2 years later, he said .......your endometrial lining is like two inches thick...and your uterus is the size as if you were 5 months pregnant ...you need to go back and see your GYN. I had explained that sometimes I would bleed so heavily that it looked like I killed a deer in my bed. I guess those were the times the “abnormal” lining let go. So.... booked for a D&C and uterine ablation......life changing as far as bleeding went......but I went back for my follow up and I was like.......:.thanks........but I still have pain......both cycle and ongoing.......so the answer.......wait 6 months for things to settle down and we will see how things are........wait six months.......go back......another internal....another ultrasound nothing abnormal.....back to GP......maybe you need Catscan........wait for that.......nothing abnormal........go back to GP.........he says “I believe you about the pain......if you were my sister........I’d want an MRI” so I wait 8 months for an elective MRI.....they find a fatty liver and a pancreatic cyst.....but no reason for the ongoing pain......GP says......Maybe it is gastro.......you have some IBS symptoms........so I wait for a referral to a gastroenterologist.......9 months later after a 2 min appoint he said.....I’ll do a colonoscopy......so I wait for that.........months go by.....maybe 6 and I finally get an appointment........:NORMAL........I cried...........I was hoping for something........:so I go back to the Gastroenterologist......he said......well you do have some pain radiating above your belly button......maybe the problem is higher in your digestive tract.....endoscopy is needed.......another wait.......another normal finding......go back to GYN. He says......well.......since we ruled out everything else.......it must be endometriosis .....but I won’t know without a Laparoscope. I was like “where do I sign up!!!!!”
I woke up from the LAP and the nurse couldn’t tell me anything ...... wait for your follow up in 6 weeks............but I knew that they had found and removed something because the sharp pain on the left was gone....,
So 6 weeks later I go for my follow up.......this was of course after I had a ESBL antibiotic resistant UTI from the catheter and an infected belly button because one of the stitches didn’t dissolve properly......I finally hear......”YES you have Endometriosis”
My GYN has removed spots from several locations a big cyst of one Fallopian tube and cut scar adhesions from around my bladder.
I was like “thank you.......but.......I am still in pain”
So he makes two suggestions......maybe the pain is coming from your bladder IC (cause after the lap I now have worse bladder symptoms) and you should try the IUD
So I make another appointment to put a Mirena IUD in.
Do that.......some relief but at the 6 week ultrasound follow up......the thing is too low hanging out of my cervix....
So the GYN pulls that one......I go two months......in lots of pain and say.......put another one in.......so he said I’ll do it at the hospital with a hystoscope so I can see and you won’t be uncomfortable and I can make sure it is in the right place.
So he does that.....at the ultrasound follow up......yep.......it has displaced.
I am trying to get on Visanne........but I suffer from chronic migraines.....,so my GP and I are trying some new meds to see if we can get the headaches under control first........
Meanwhile I have been referred to a urologist who did a cystoscope and he can see the spots of endo on my bladder.......he can’t do anything. Needs an endo specialist.
I go to a chronic pain clinic.....,,get acupuncture, epidural injections..next I may try nerve blocking.....
Today I meet with their pelvic physio.........In July I am signed up for a group program.....exercise, mental awareness, etc.
Beginning of May I see my GYN and I am going to ask for the referral to an Endo specialist.
I guess my story is.......even with a dx.......the battle isn’t over........
It is a hard road.
I find it good to talk to others. Both online and I now have people I can call (that I met online).
This can be isolating......when you are in pain, it sucks away your energy..,.,when your periods are debilitating you miss work......significant others don’t get why your female parts are not open for business.......
There are others who have walked in your shoes......you are not alone.......
There are good doctors out there.....I can’t imagine how I would feel if all this time I was told it was all in my head. My doctors have been good......they have done the right tests, etc......it is an elusive disease.
I had a just over a year of symptoms before I was diagnosed, and then about two/three months of investigations before endometriosis was became the definitive diagnosis. Prior to this I had always been pretty healthy, certainly no gynae or GI problems or any issues with pain of unknown cause. I am 35 now. My symptoms were initially ill-defined; I was generally fatigued, lost my appetite, had a bad back etc. but bad lower left quadrant (LLQ) pain and gastrointestinal issues were some of the most prominent symptoms.
My symptoms and signs waxed and waned a bit, but they were not indicative of anything specific, they did not add up to a specific diagnosis. I am a doctor myself ..... so..... I, oh so very wisely, (and ironically) wrote my symptoms and signs off as an odd mixture of possible IBS, coupled with the effects of an absolutely awful diet, no sleep and no exercise due to work together with a good dash of "its all in my head/it is all due to work stress". And essentially did my best to ignore them.
After a about a year of steadily getting slowly worse, I suddenly deteriorated over a relatively short amount of time - I lost a lot of weight, became very anaemic, the pain became unbearable but also localised to a discrete point in my LLQ and radiating into my leg, hip and back. I started throwing up a lot, and fainting/collapsing at work as well. My lovely colleagues in my department got me to go to my GP to start getting it all looked in to.
The initial investigations were alarming, firstly suspicious for bowel cancer, then for ovarian cancer. I had a number of investigations including a colonoscopy (normal) and lots of imaging across multiple modalities (additional 'whine on the side' - It was NO fun being investigated/treated in the hospital I work in) .....skip forward a through some overly complex and boring bits..... and the end results were indicative of endometriosis with endometriomata formation on both ovaries.
I have been off work for about seven months now, which I cannot express how much I hate. I am on the strongest analgesics (painkillers) and anti-emetics (anti-nausea and vomiting meds) available. I really lost the will to do much of anything and was either paralysed by pain, being sick because of pain, or dopey because of analgesics. The best analogy I can think of is that I went into a sort of hibernation, predominantly spending time in bed and withdrawing a lot from the outside world as I felt so unwell.
I had a laparoscopy on Tuesday (9/4), I had complex endometriosis identified at surgery, present bilaterally. My consultant was able to achieve full macroscopic clearance of the disease at the time. My first memory after waking up is not having any more LLQ pain. I may well be jumping the gun a great deal or be completely influenced by the placebo effect, but the very severe, discrete, pain I had before the lap has gone for now.
The port site incisions from the lap hurt a bit and my abdomen feels very tense and distended as a result of the lap, but I am only 48hrs post-op. And, since the lap I have not been troubled by the severe pain and other issues I had before. Here's hoping it stays that way. Hopefully I should be back to work ASAP!
So there is hope and light at the end of the tunnel and I really hope you are able to find some resolution!!
In the meantime, if you are in pain while you are being worked up or treated make sure you doctor knows, go back to your GP until you get decent analgesia, or sent to see someone who will manage you from a pain POV. There can be so many issues to go over in medical appointments with endo. I find it helpful to 'split' or 'theme' my regular GP appts. My major issue is pain, and sickness, so in some of my GP appts we review my pain, the analgesics and anti-emetics I'm on. And then the subsequent appt focus on the other endo stuff/ investigations/ treatments etc., rather than trying to get through everything in a a single 9 min appt.
Best wishes for the future, you'll get there eventually.
Advise for someone loosing the will
Learning to live with endo
First post .. A I fighting a losing battle?
