Endometriosis UK
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endo diagnosis problems

I am new here and I have multiple symptoms of endometriosis: painful periods, pain after sex and internal examinations, uti style symptoms (with no uti), and a lot of random pain mid cycle. I am on the contraceptive pill and so my periods are not heavy, but before the pill they were. I went to the GP multiple times and since moving to London the appointments have taken my symptoms more seriously. I had an internal examination and internal ultrasound which came back fine. I was then referred to a gynaecologist and have just got back from the appointment although it was very disappointing. I listed and described all my symptoms and then had another internal examination which caused a lot of pain. The gynae then said that i am to run three pill packs together and come back for another appointment in 4/5 months and if the pain has not stopped I will have a laparoscopy. But he also said I did not have the symptoms of endometriosis as I have pain in between my periods. I said to him I thought I did because of all my other symptoms but he still wanted me to wait.

I was wondering if anyone else has been in a similar situation and what advice I could get on pushing for a diagnosis? I am 20 years old and I have read the younger you are the less seriously they take it. I just don't understand why he said I don't have the symptoms when I clearly do.

Thanks.

14 Replies
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I am so sorry to hear you are being treated this way. I was lucky as my gp referred me pretty much straight away to a consultant.

Because iwas referred to a private hospital through the NHS my gp had told me they wouldnt run tests but would go straight for the surgery instead as the consultant would get paid more.

My consultant when i first saw him pretty much said I dont have endo as I have 3 children and im 25 which is bs as iknow people who found out they had endo after multiple children and around my age.

Keep pushing. Go back to your gp and maybe ask for a referral to a different consultant as it seems you are not being taken seriously enough.

I was meant to have my lap last friday but it got cancelled while i was ready and waiting to go to theartre.

Feel free to pm me if you have any questions x

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My new GP has been so good and did refer me quickly I just am worried now because the consultant ignored all my symptoms basically. I don't know whether to just wait until the next appointment in 4/5 months?

Thanks so much x

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I personally feel that birth control masks the pain. I have been on and off contraceptive implant for 9 years. My consultant now wants to fit the coil while he does the lap.

I would have a think about the pills hun xx

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I have pain pretty much every day an have been referred for a laparoscopy - saw a gynae team who are pretty certain that it is Endo and not PID (I've had swabs, antibiotics, clear sti tests, blood tests and internal examinations) - I struggle to notice a pattern with the pain - roughly correlates with just before my period but I still experience the everyday pain - especially when lying down, for which I think may be adhesions. I've been on the pill since I was 16 (so 12 years) and maybe because of that I've never had heavy periods. I will say that the consultant I saw booked me for a laparoscopy based on my symptoms of pain after sex and bleeding - she didn't even ask me about how it correlates to my cycle. I've learnt through my journey so far that you have to be pushey to get where you want sadly - I'm very fortunate to have had a boyfriend and family who have come with me to appts and pushed me to ask for what I need (the GPs I saw have been prettt horrendous). Personally I don't see the advantage or logic in asking you to take 3 months of pills back to back because the pill is meant to alleviate symptoms. If going on the pill alleviates your symptoms then it's worth considering but it also means -in line with what your consultant said - that you won't get the laparscopy - which is required for a diagnosis. What did the consultant say with regards to that? I guess it depends on how much your symptoms are impacting on your life? At the end of the day the consultant is one person and I've learnt it's so important to get a second opinion if you're not happy.

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My pain is really similar to how you described yours and I am currently taking the pill and have been for two years which helps with symptoms. I also don't understand why he is making me take some much of the pill because that won't show the full symptoms. He just said if the pain continues then we will do a laparoscopy but I kind of don't believe he will because my symptoms will just stay the same over the next few months. Also the only symptom of endo he mentioned was pain before a period and he is only letting me have one in between now and the next appointment. How should I get a second opinion?

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I think it's worthwhile going back to the gp and discussing what's happened and saying that you would like to be referred for a second opinion. Maybe speak to endometriosis U.K. - Rather than ask for medical advice (which they prob don't do) just ask what the referral process is for a laparoscopy and then you can go to your gp with that as a second opinion.

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Hi, I would definitely go back. The first time I was referred to the hosp the consultant wasn’t very sympathetic and scans etc were clear and she said it isn’t endo so was referred back to GP and it was soul destroying as I’ve been suffering since I’m 17 (I’m now 29) so I kept persisting and GP finally referred me again and luckily I saw a different consultant and he was so sympathetic and supportive and I’ve got my lap scheduled for Thursday. You know your own body so don’t give up even though sometimes it feels like you ought to good luck!!

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Hiya - I'm sorry you're not being taken seriously. I was diagnosed in November at the age of 22, so I definitely know what you mean about doctors not always listening when you're young! Perhaps it would be worth going back to your GP and asking to be referred to someone else? It's all very well if you trust your doctor and their advice to wait 4/5 months, but if they dismissed your symptoms out of hand, there's no guarantee you'll be taken seriously even if you wait. You mentioned you're in London - I'm not sure if we're allowed to mention specific hospitals, but London has several specialist endo centres, and you have the right to ask to be referred to them. That might be your best bet as they are specialists! You can google it and a list of centres should come up - or PM me if you want more detail. Good luck!

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I'm so sorry you've been going through this. I had the same experience. I got referred to the gynecologist and was asked to take the pill back to back for 3/4 months and then come back.

I did just that and my pain didn't improve although my bleeding did (as I wasn't having eoriods) the pain was still there. My symptoms involve chronic pelvic pain all month long not just during my period. The consultant I saw the second time (a different one) said I should just carry on as I was although my pain hadn't improved. I pushed for the lapoaoscopy.

It's up to you whether you try the bc first but as said already the surgery is the only way to really confirm a diagnosis and the bc will only mask the pain. You are able to ask for a second opinion.

I wish you all the luck, this is such a battle. Xx

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Hey :)

I have been to my GP 7 times complaining of endo symptoms. I have recently been diagnosed with PCOS and I’m finally being referred to a gynaecologist on Wednesday after hassling since before Christmas.

I think pills do mask the pain but I’m sure the GP would want you to try it as it is cheaper than an operation for the NHS (unfortunately this is how they look at things)

Hope you get things sorted and the answers you’re wanting!

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If I was you I would tell your GP that you want to go see another guarnatolgiest to help put your mind at rest cos it's causing you pain and stress. I'd research about different guarnatolgiests in your area and try find one who specialises in endometriosis and ask the doctor if you can be referred to that one. The guarnatolgiest I found has been brilliant because he specialises in it and does a lot of research in it. He also mentioned that some guarnatolgiests who don't specialise in it can sometimes miss it in the laposcopy. So having someone who's really experienced in it might help you. I also told him if there was a slight chance he thought I had it that I wanted a lap straight away because I wanted it gone. I don't react well with the pill so that wasn't an option for me and I want to start trying for a baby soon so the coil also wasn't an option.

I have really similar symptoms to you, including UTI symptoms and he found endo on my bladder and bowel. Having it on the bladder isnt very common. When I was reading about endo I hardly ever saw that as a symptom but it is.

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I got hospitalised 4 times and went to the doctors 5 times before they decided to refer me to a gynaecologist! At first they thought it was appendicitis but all my bloods and scans came back clear! Thy just used to send me home the next day with lots of codeine! I had had a lot of ultrasounds but they said endometriosis doesn’t normally show up in them. I described my symptoms to my doctor and talked about how I am not coping at all and basically broke down, that’s when she referred me. After that they got me to have a laparoscopy a few weeks later where they found a lot of endometriosis and now waiting on my 2nd op to try and remove it!

Don’t give up and keep at them! Don’t let them push you back

Hope everything gets sorted for you!!xx

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Pain in between cycles is typical of endo sufferrers especially if you have it in the bowel etc.

My uterus was stuck to my bowel and bladder so I was constantly in pain. I would insist on a gynae referral for lap.

Although taking pill back to back might work to ease symptoms.

They won’t put your under anaethstetic unless they feel necessary.

Hope you get to bottom of it

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Hi sweetie,

It’s terrible to hear you’ve been treated the same way as myself. My situation is slightly different.

I have exactly the same symptoms as you and more. I’ve been through gynaecology, I finally had a laparoscopy last Monday. they removed my large cyst on my ovary and said that it looked like I had mild polycystic ovaries but I’m more than certain I’ve been misdiagnosed. I’ve had 3 medical professionals says they are almost certain it’s endo but apparently in the op they couldn’t find anything? I’m totally in the dark x

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