I now have an answer but it's turned into a chronic pain syndrome

Hi everyone,

Been reading through for a while but was a little bit in denial.. Been trying to conceive for over 2 years and no joy. I realised I had a luteal phase defect early on as never had osculatory levels of progesterone

The worst thing was intense crippling pain one week before my period and lower back pain constantly.

The first doctor diagnosed a uti with antibiotics and the second decided that I had hormonal related ibs. I was going to give up on my practise but saw another gp who thought it was related (combining infertility and intense pain) and referred me to the gynaecology unit at hospital. I was lucky that I was seen quite quickly and had a lap within 2 months.

I also had a hysteroscopy and tubal latency test on the same day, they found. a fibroid and tubes were clear and they removed some endo from the pouch of Douglas.

But now I'm wary about the time left between the endo growing back and having fertility drugs to conceive. I know I won't get any funding from the nhs (husband has previous children) and e current gp that I am seeing doesn't have another appt for 4 weeks, I can't see another one as the rest of the GPs in he practise dismissed me with my symptoms,

I guess I just need someone to help me, tell me everything will be ok.

It's pretty scary

6 Replies

  • Hi hun firstly please don't give up hope ( i know it's frustrating) I conceived. I have stage 3 nearly stage 4 severe endo. I had it lasered in jan 2011 but it came back with avengeance straight away. I had 2 days of very minimal spotting tiny spots not even a full period and conceived apr 2011.I also have pcos which can make it difficult to conceive so to have pcos & endo I was lucky been as I have a double wammy! also wasn't entitled to Nhs funding as I have another child before who was born in 2001 (before I had endo). Endo pains started in 2008 and was diagnosed in 2010,diagnosed with pcos in 2003. I'm now on prostap and have a mirena coil fitted,take regular high dose painkillers and still in severe chronic pain everyday. Im due to see my consulatant again in aug.I wouldn't wish this awful disease on anyone. It took me 2 laser ops before I could conceive. I don't have periods now I have the coil but prior to this my periods was pretty much none existent and could go 12 months without a period so I never thought I would conceive. Good luck!!

  • If you are going to go for private fertility treatment you can often self-refer so don't need to see your GP at all. Sometimes they will ask for a GP referral, but it's a different system to NHS referrals so I would recommend you look at clinics and start calling them. Lots do open days where they go through the process, but if they haven't got one coming up they will be happy to talk you through and send you the info packs - although much of the info is on their websites.

    The average waiting time for an appointment at a private clinic is about a week!

    Good luck x

  • Hi love I know you've lost confidence in the other GPs but now you have diagnosis and its recorded why don't you try and get an earlier appt with one of them. You don't have to cancel the other. You might just get somewhere this time. All the best J x

  • Please try not to worry too much, I had a lap in March and endo removed and I have been trying to conceive for 4yrs and planning IVF in August on NHS. I have those concerns too about it coming back and the fertility drugs. The above comment is good whilst you wait for the GP appointment to make another with one of the other GPs they cannot overlook your diagnosis now and you are entitled to tell them 'no you need to listen to me because this is what I have', unfortunately I have found that losing my temper a bit because I have had enough of being ignored has made GPs listen more and take it seriously. Let us know how you get on hun xx

  • Thank you lovely ladies. It feels so frustrating as everyone is expecting me to be expecting!

    I think I might wait until the next appointment as it will mean a full cycle completed after my lap so hopefully I will be ,ore optimistic when I refer myself to the specialist.

    Pain is terrible today but I am having my period. It's lovely to be slightly more optimistic rather than just unknown scared


  • Hi there. I was 'diagnosed' with chronic pain syndrome until a consultant agreed to do a lap on me and found stage 3 endo and adhesions. I have suffered for years with bad period pains, gone from very heavy periods to very light and spotting every month, back pain, hip pain and bladder pain and pressure / urgency issues. i also started getting extremely bad shooting pains on going the toilet whilst on my period. i was told this was all due to my ' chronic nerve pain'! i feel like this is just a cop out for consultants who don't know what's wrong with you, or choose not to investigate until you push so much they decide to do something.

    I am now waiting for a further lap to treat my endometriosis in the hope it relieves my pain and helps me to conceive.

    I hope you have managed to sort out an appointment with your doctor by now, try not to worry too much about not being taken seriously any more by doctors who have previously dismissed your symptoms, as they cant argue with the clinical findings which have obviously been causing your symptoms.it is horrible feeling like you are being dismissed though as i have felt like that for years too.

    i wish you all the best for the future and hope you get some further help and support from the doctors.


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