Possible Endometriosis Symptoms - worried about GP's reaction

[LauraPickering92]

Hello everyone, I was just looking for some like minded individuals where I could share some of my concerns / worries and found this group. I have recently set up a GP appointment to discuss some of my symptoms (very irregular periods lasting sometimes much more than 38 days, stomach bloating, extreme stomach pain throughout the month, difficulty conceiving etc). I've had these symptoms for quite a while now and have only been the GP once before with my concerns. Their response was basically "what do you want me to do about it? It's just period pain". That was quite a few years ago but I am really concerned that when I go to my most recent GP appointment they are just going to blow me off again. I cannot describe the level of pain I am in near constantly, but my experience of GP's has not been positive. Is there anyone on here that have had similar experiences to me? If so, how did you handle it? Also, if anyone on here has had similar symptoms to me I would love to hear your experiences. I haven't had an endo diagnosis yet, so I guess I don't know 100% for sure that its what I have; but all of the symptoms seem to fit I think. I just don't want to get told that it's all in my head again, and I'm worried that's exactly what will happen. Any advice would be appreciated. Thank you x

[Brambledoggy]

It’s not all in your head Laura. Read my profile. See if it helps and then contact me if you have any questions. Don’t be fobbed off ever by anyone including the professionals. Even the ones at the top. Your level of pain isn’t normal and the fact that you’re on here posting tells me it isn’t. You need the right kind of help. It is out there, but it’s knowing where to look. Endometriosis Uk is a start and then finding a BSGE centre is second. Your local GP probably won’t know as much and deffo not as much as a long term endo sufferer. This website can offer support but the endo hotline/helpline will 0808 8082227. DM if I can help. I’m 51 and had it all my life. Nina.

[wanwood]

If you present it as you have done, you will be taken seriously. This appointment is a new chance and unrelated to the past. If asked what do you want me to do about it — gynaecology referral and infertility referral (if it’s been more than 1 year or 6 months if you are 35+). The pain is affecting your quality of life and ability to do normal things (if this is true, say it). And say you came about this before and felt you were treated dismissively or you would have been back sooner, because this is having a huge impact on your life. If they say the wait for a gynaecologist is incredibly long and there’s almost no point, insist on the referral anyway.

[Avourneen]

Make an appointment with a different GP the person you saw is a waste of time. You can ask to see a differnt GP without a problem or see if any private gynaes in yur area will see you without a GP referrel.

[Dee_EndoUK Moderator Endometriosis UK]

Hi Laura

First of all, a really warm welcome to the forum - you've definitely come to the right place for support as we all understand what you're going through. I'm really pleased to see that a few of our members have reached out to you already. Along with the forum we also have support groups all over the UK, where you can discuss endometriosis and the issues you're experiencing face-to-face with other sufferers. You can find out if there's a group in your area here: emdometriosis-uk.org/find-a... - if not, we also have an online support group that's separate to the forum.

I'm sorry to hear that you feel so dismissed by your GP - no pain is 'normal' and it needs proper investigation, especially coupled with the fact that you're struggling to conceive. On our website we have a useful 'pain and symptom' diary that can be filled in and taken to your next appointment - sometimes it really helps having everything written down. You can find this here: endometriosis-uk.org/sites/...

If you're not happy with the information you receive at your next appointment then please ask for a referral. Your GP may not be a specialist in endometriosis, so it may be beneficial to be referred to someone who is.

Wishing you all the best with your next appointment x

[Lindle]

There are referral criteria for BSGE centres which require evidence of severe endo so unfortunately you won't get a referral at the moment. These centres are in tertiary care - so for special cases. The NICE guideline requires that you are seen by a gynaecologist with expertise in diagnosing endo - a special interest. This is in secondary care so in a normal gynaecology department.

[BloomingMarvellous]

Laura, we are all behind you - we have your back. When you go in try no to go in alone, we are there by your side. State what you’ve said here, outline what you are after from the appointment, ask about the time-line you expect it to take … and visibly in the session write it down so they know you are on it in the best sense of the word. I am educated, hetro, well and out spoken, middle class, privileged and white so ostensibly am in a position to get the best feasible response socially bar the fact am a woman of a certain age . I get notably improved responses when my husband is eyeballing the situation for most medics (sigh) It shouldn’t make a difference but often it does ( medical misogyny…) and even more annoying the burlier the bloke the better 😂 ( have sometimes wondered whether builders could moonlight and effectively cut the messing about by about 1000%) . So irrespective of my stance on this really being outrageous at this point, I prioritise my health needs above the outrageous basic disrespect to all women and would drag in any burly to ensure I get the right treatment. Feel free to ensure you get what is absolutely your right to good care, diagnosis and informed great care.