Uncertain Diagnosis...Advice much appreciated!!

Hi All, I'm new to this so hope I can explain properly to get some advice. I am 24 years old and from when I first started my period I had extreme pain once a month to the point of fainting, being sick and being unable to get out of bed - which I'm sure as your on this site you'll no exactly what I mean.. I had an ultrasound when I was around 15 years old and nothing showed up so I was told to go on the pill to see if this eased the monthly hell. Luckily for me, the pain eased and each month was manageable. A few months ago I started having problems with the pill and was on my period for 6 weeks straight. I went to the doctors and she suggested coming off the pill to let my body have a rest. I came off this and had my first period about 2 months later, needless to say, it was back to hell again. I was off work so ill with the pain. I went back to the doctors to see if I could go for a lap or have any tests to see if it was endometriosis or anything. The doctor said that they no longer use laps to diagnose endo as it can cause more damage than good from going in blind and could irritate it more, she said she had been a doctor long enough to know that it was definitely endo. I was totally shocked that I just had to go off her opinion for my diagnosis. I asked what would happen next and she said I was lucky that it is managed by being on the pill so she told me to just go back on this. I feel like she was so blazae about it all. I asked if I'd be having any tests as she didn't seem to be suggesting anything and she said she'd sent me for an ultrasound again but then went on to say it probably wouldn't find anything since it didn't last time and she said she'd send me for swabs but said this is to check for infection which she knew it wouldn't be as it had gone on too long. She said 'to be honest I'm just crossing Ts and dotting Is by sending you for the tests because I have to but it'll definitely be endo'.

I feel totally in limbo now as don't feel like I can just go off her opinion but then she is a doctor so do I just need to accept that's what it is?! Also, my partner and I want to start trying for a baby and we'd planned to wait a year when we've bought our new home and he's looking to change jobs, when I asked the doctor about it affecting our chances of conceiving she said if you want a family your better to try sooner rather than later, so now we're changing our plans to buy a house now instead of within the year so we can start trying earlier but I just think am I doing the right thing? Should I ask for a second opinion and is she right about them no longer offering laps for diagnosis??

Thanks you so much to anyone that has read this, any opinion or experiences will be much appreciated! xx

4 Replies

  • Hi - I really do sometimes feel such a sense of hopelessness when I read of what young women are told by their GPs but this really did make me gasp. I'm not entirely sure what the planet is that your GP lives on to have been a doctor so long to be able to tell you that you have endo without apparently having any knowledge of how it should be investigated.

    If you are in England or Wales the procedure is covered by the NICE guidelines that underpin NHS treatment but other UK countries must follow similar as ultimately it is underpinned by European guidelines by an organisation called ESHRE.

    The protocol to be followed is at the link below. The first suggested course is hormone meds, which you have already tried and as you will see if you are wanting to conceive in the near future then the decision to have a lap is yours to make.


    I suggest you make an appointment with another GP in your practice and take a copy of the NICE guidelines and ask for referral for a lap. If you are in England you are covered by NHS Choices and can see any specialist you want so you can ask for referral to a centre that specialises in endometriosis to be sure you are diagnosed correctly. Click on my name and have a look at my post on how to find a specialist. Come back if you have any problems. x

  • OMG what a strange response! I would ask for a second opinion from a different GP and ask for a consultation with an endo specialist at a specialist center. If you have no luck via a GP you can pay for a consultation with a private specialist for around £200 but then have any treatment carried out on the NHS subject to the usual wait times etc. You can find one near you on the following link bsge.org.uk/ec-BSGE-accredi...

    I think the point she's missing is that a lap can be used to treat endo not just diagnose it. If they are able to remove it during a lap this alone could provide you some relief.

    The pill isn't for everyone. I came off it after about five years as I started bleeding all the time when on it. The bleeding stopped when I came off it but would start if I tried it again so I gave up using it.

    She's probably right that an ultra sound will not show anything as endo rarely shows on a scan. Mine came back clear but the lap found endo in the P.o.D, sticking my uterus and bladder together and one of my ovaries was stuck to my appendix with endo adhesions. My surgeon said he couldn't laser any of my endo as he risked damage to my bladder. I've since read, on this forum, that a specialist would have been able to do this kind of surgery so I would really recommend seeing a specialist from the start not a general gyne like I had.

    When I asked my surgeon what should be done next he said "get pregnant as soon as possible!". That was 18 months ago and still no luck with TTC. We'll be starting IVF next month.

    Despite what my lap showed there wasn't any indication (at the time) that the endo would stop me conceiving and my tubes were clear. So don't worry that endo instantly means no babies. Lots of women can conceive with endo it just depends on where it is. If your GP won't refer you for a lap she may refer you for a dye flush. This will check if your tubes are clear. If they are not then a surgery could potentially clear them or remove them if they will pose a problem for a potential pregnancy (you can still get pregnant via assisted conception without your tubes). There are also a number of tests that you can get done via your GP to check if things are ok with both of you. Sadly along with my issues my husband has also got a male factor problem but once this was found out we got referred to the fertility clinic sooner than we would have otherwise.

    Sorry to ramble on :-) The more you know about your condition the more easily you can make these big life decisions. I would get a second opinion with another GP or a specialist.

    Hope some of this helps. Good luck xx

  • 'The doctor said that they no longer use laps to diagnose endo as it can cause more damage than good from going in blind and could irritate it more, she said she had been a doctor long enough to know that it was definitely endo.'

    OMG! What the actual ****???? Seriously the doctor has a god complex.

    See another GP. Say you want to clarify what Dr God told you as were left feeling confused by it. Ask for referral to an endometriosis specialist - especially as you are making massive decisions based on what's wrong/treatment/fertility.

  • "The doctor said that they no longer use laps to diagnose endo as it can cause more damage than good from going in blind and could irritate it more, she said she had been a doctor long enough to know that it was definitely endo"

    Regarding the first part of this she has a point and it is true that there is a move away from "diagnostic laparoscopies" for the reason she mentions. It is a patient safety issue and there is a need to reduce the number of procedures that some patients undergo. Therapeutic laparoscopy aims to deal with disease and remove it. See and treat aims to diagnose and disease at the same time. The following page explains the difference between these approaches.


    The second part sounds presumptious and surprising !

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