Hi everyone :)

I'm new here and I'm looking for some advice on how long it took for doctors (and family members) to start taking you seriously when you suspected that you had endometriosis? How long did it take to be diagnosed? I'm really lost right now in a sea of symptoms (which I strongly expect to be endometriosis) and nobody seems to really care. My family are fed up hearing me talk about it and I feel like the NHS want to believe its anything serious. The fact of the matter is, something is seriously wrong and nobody seems to be listening. Can anyone shed any light on their experiences with endo' diagnosis?

Many Thanks!

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14 Replies

  • Hi

    I am in exactly the same position! I suffer from interstitial Cycstisis and the doctors have always but the pain down to that, but recently where my doctor said I think this is endo!!! FINALLY

    He has referred me to gynae co distant but the wait at my local hospital is 9-12 weeks so I am going to pay for the initial consultation private!! Can't put up with the pain any longer!!! My symptoms are terrible lower pelvic pain, almost like contractions, hip, buttock, thigh pain bloated tummy that gets worse as the day goes on, feeling so tired, low and generally very unwell!!

    How about your symptoms? Xx

  • Sorry to jump in on someone else's post but I have suspected Interstitial Cystitus and I wondered what pains you got with this? I have a lap to remove endo last month and they also did a cystoscopy which showed I have inflammation of the bladder. I have quite low pelvic pain which feels almost like it's burning and wondered if this was IC pain? Xx

  • Hi

    Yes that's the pain I get like my tummy feels hot, pelvic pain and heaviness. Also needing to go to the toilet much more frequent. X

  • Thank you x

  • Hi Rachel - can you click on my name and look at my post on the treatment pathway for suspected endo. Pin your GP down as to whether he/she agrees it should be suspected. If they don't then ask them to to put it on your records that you definitely don't have endo with the reasons why not. They won't be prepared to do this so say you want the NICE guidelines to be followed for suspected endo.

    Typical symptoms would be painful, heavy periods often with clots, irregular cycles (but not always), fatigue and general malaise and, as endo progresses, there are often IBS type symptoms and pain with sex. Pain can then gradually be present at any time of the month with referred pain to various other places. x

  • This was so helpful, thank you so much! x

  • hi,  my mum has thought ive been being a hypochondriac for 3 years until one day  i made her read an article I found. Now she takes me seriously. Only the other day she was talking about how it opened up her eyes and she had no idea. She hasn't done the research I had. This is a link to the article in wales online and features women telling their own endometriosis stories. I dont know if it'll help you but its helped my mum take my health a bit more seriously and be more sympathetic and understanding. As for the rest do what Lindle says. I'm seeing a specialist end of the month and wish I'd done it 6 months ago.

  • Took me 3 years to get a diagnosis with ignorant doctors that neglected my problems I was having with abnormal bleeding and severe pain, it all changed though when I went see a different gp for bladder issues as I frequently urinate a lot sometimes even wee myself most times and it was ruining my life ,constantly needing the toilet and it at to be dealt with in the end because I was going through loads of underwear, I had a bladder ultrasound scan for that and that detected something in my womb it went from there after, I went through ultrasound to transvaginal scan and pelvic Mri which had them confused what the problem was they were saying blood clots to fibroids, The pelvic mri detected more of what was in My womb that time I had a polyp with thickened lining which they removed with hysterscopy, but even when that was removed I still bled abnormally,and my gynocologist then wanted to do a lap with hysterscopy the lap to look for endometriosis and hysterscopy to check the womb to make sure nothing had developed after removing the polyp, I had my laproscopy last Friday and still recovering and they did find that I do have endometriosis in the pouch of Douglas. It is a long journey when it comes to diagnosis at the time before my diagnosis edometriosis was always at the back of my mind some doctors don't even want to diagnose issues anymore they are ignorant to people's symptoms some doctors will care about your symptoms some don't it's hard to find the ones that do my advice to you is to book an appointment with a different gp and raise your concerns don't let the gp talk over you some of them tend to talk over and ignore this is where you need put your foot down on them make em listen and tell em how much it's effecting You and that you can't keep carrying on like this When gps are ignorant that's when you gotta put your foot down especially if it's happening one too many times cause with these kind of gps they tend to not listen or help in any way Alls they do is pescribe medication when they don't know what the problem is only tests can confirm problems the problem with most gps is they only care about been paid loads and saving money if your in the uk it's a failed health system if your ask me I have experienced refusal of medication after surgery where they said that they can't pescribe me any medication because they would have to pay 10 pounds I complained about that cause it was shocking what they came out with they rather let patients suffer with pain because all they care about is money I know it's a massive sentence but I needed to rant on that subject

  • Hi Rachel, I'm new to the group too :) - my symptoms were heavy, painful periods and very painful sex. My diagnosis involved trial and error but all in all was about 2 years. The 1st thing I was told it could be (after an internal) was vaginismus, and when I went back to my GP he thought it could be a cervical erosion (after another internal) and was told I would need my cervix cauterized. During my 2nd app my GP wanted to be sure so he referred me to a gynae consultant. My 1st app with the gynae I had a internal scan, of which no endo was found but he decided he wanted to do a laparoscopy. Laproscopy showed no endo but I had a couple of cysts and they also cauterized my cervix whilst I was under. After healing from the op, my pain was still there so I went back to the gynae consultant and he prescribed me on pro Vera tablets. These tablets didn't stop the pain and I put on a lot of weight in about 2 weeks and was very bloated so after about 2 months I stopped taking them. Went back to the gynae and said although the endo wasn't present in the op, it could still be it and suggested decapeptyl injections. Pain completely went so they diagnosed me with endo. I've got my follow up app in a couple of months.

    I think the trouble is, although endometriosis is becoming more common, dr's don't seem to know much about it and it is hard to diagnose. If your dr doesn't believe it is endo, they need to come up with other options and other treatment options so you can rule them out if it doesn't help. If the injections I had didn't work, my next step was to get a 2nd opinion from another gynae consultant or pay for a private consultation.

    I hope you manage to sort it out.

    S x

  • I was constanly back and forth to the doctors until someone took me serious, I got fobbed off for a while with them telling me I was suffering with IbS, which I have had in the past. One day I went to the doctors and I was so hysterical because I was so fed up with the pain that I asked for a referral to a gynaecologist and the GP did this without hesitation. I also took my mum with me, which I think helped as she was quite calm and knew we weren't leaving there without a referral. Keep going and try and stay strong xx

  • I had symptoms from the age of 14 but I just had a feeling something was terribly wrong so I hid it and didn't speak to anyone. At 20 I started bleeding for about 2 months I was so frightened I went to the doctors in university where they fobbed me off saying it was a prolonged period I explained to her about the pain I had been having for years and she said well it must be a bad period that's all. She told me to go away for a few weeks. I called my mother in tears and said the doctor wasn't taking me seriously my mum collected me and I crippled over in pain and then I admitted the pain had been like that for years. My mothers a midwife and was a nurse on the gynae ward she got me seen really quickly by our doctor I was anemic at this point and had a quick referral to gynae she came with me and explained what she had seen and he said straight away I think it's endo it was the day before my 21st birthday.

  • Hi. It took me 20 years and it was only because I had an abscess on my ovary picked up on a scan after seeing the gp for severe abdominal pain. Things have improved since then. It may help to take a list of symptoms with you to the gp nd any info on endo from nhs or end uk. It may help to find a good gp who listens at your practice, ask around. That's how I got my current one who's proactive. Hope this helps x

  • I would advise you to watch endo what? You can get it online and has lots of information although you do have to pay to download it's worth every penny. X

  • Being diagnosed is difficult indeed. It took me a long time, always complaining and just getting pain killers. In the end I was diagnosed only because I though I was anemic after cutting meat to reduse the pains. Then the they found cysts with the ultrasound and cancer cells in my blood, besides my family history (my sister was diagnosed with endometriosis).

    Maybe asking for an exam to the cancer cells in your blood. If C125 and C1.99 are increased then the doctor will take things more serious and check if it's endometriosis. Usually C125 and C1.99 are increased when the patient has endometriosis. You can ask for an ultrasound but it will only show something if there are cysts, miomas, etc.

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