New here! Looking for advice/support please!

[Lauraxoxo]

Hi everyone. I’m laura. I’m here as I am at a loss and feel deflated! I went to my go a few weeks ago saying after much research I think my symptoms I’m experiencing is endometriosis. She rudely ruled it out right away saying I’d be in more pain, calling in sick and not coping day to day.

She took Sti swabs (even though I haven’t had sex in ages!!) and told me to call back in a week. Results came back all clear btw!! So thats sti’s ruled out! Check!!

Within an hour of me leaving the drs she called me saying after discussing me with a colleague she was referring me for an ultrasound scan. 4 weeks wait for an appointment date. Had the scan a week later I got all clear and basically told no further action.

I harassed for a dr to call me. They were shocked I had expressed my concern for endo and given a scan which wouldn’t have even been picked up on the scan!! I said no further action is not good enough! Booked an appointment to see gp for next Thursday. This am I received a letter cancelling it I now have another 3 week wait. So 7 weeks to see a dr it will be!! Was so poorly last week while I was on. The pains were incredible. Stopped bleeding 5 days ago and now I am back on and back in agony

How do you get the drs to take you seriously? Referrals etc??

I’m sorry for the long post. No one seems to really understand. Xx

[ChloeL934]

Hi. I hope you are okay. I comeplety understand where you are coming from. I was in pain for around a year before anyone took me seriously, constant trips to the doctors, hospital, all telling me it was my period or part or growing up these pains where normal. I kept pushing and one day my pain became so bad I couldn’t move off the floor vomiting screaming in pain, my fiancé had to call an ambulance for me and then I was seen by a gyne and had ultrasounds etc. And only then was I diagnosed. I saw a gyne and because I refused the pill she basically said there’s nothing I can do for you and discharged me, no compassion, didn’t even seem to care I was in the room less than 15 mins I felt humiliated and let down. Now I am waiting to be refered after demanding for more tests and this time I am standing my ground. Please keep going back and standing your ground. You and you alone are the only one that knows what pain you are in and please don’t give up. Always here if you want to chat xx

[Lauraxoxo in reply to ChloeL934]

Crikey you sound like me except I’ve not experienced vomiting with it. The dr mentioned me going on the pill to cope with the pain but said it would be discussed after the scan. I don’t want them fobbing me off with a pill masking it. I want to know exactly what is causing it. Scans from what I have researched are pointless with endo. We need a laparoscopy. I think the taboo behind endo will always baffle me. I don’t know why the drs won’t take us seriously. Thank you for replying hun xx

[ChloeL934 in reply to Lauraxoxo]

Exactly! I don’t want to be fobbed off all the time, I want answers I’m sick of it now. I don’t want to have to take the pill masking it like you said. I want a proper treatment plan. I think it’s disgusting how they just dismiss it. I am seeing my GP on Thursday who also sepcialises in gyne, so I am going to ask for a laparoscopy and see what they say, the gyne I saw before said it can course issues with you’re fertility but leaving it untreated also can so you can’t really win either way. I’m so confused why the doctors won’t take it seriously as recently I’ve seen a lot on the news, this morning etc xx

[Lauraxoxo in reply to ChloeL934]

Good luck for Thursday. Let me know if you get your laparoscopy wish. I’m calling the gp again in the morning. There has to be a sooner appointment. Xx

[Maryspriggs in reply to ChloeL934]

I know what you mean; it's such a mystery that doctors don't take our symptoms seriously when treatment is available and it's so pointless to keep suffering, seriously impairing quality of life. I've not heard that laparoscopy can impact fertility, but plenty about untreated endometriosis doing so. In the states right now there is a big culture of ignoring pain because a lot of doctors got their wrists slapped for prescribing opiates. But this pain is nothing to ignore. Be tough and be persistent ! Hang in there.XXX

[Maryspriggs in reply to Lauraxoxo]

Hold your ground, Sweetie ! There is nothing as good as the experience of being truly listened to. I had to change doctors three times before I could get the laparoscopy that proved I had endometriosis. I kept being told I needed to toughen up with the period pain, take more NSAIDS. Laparoscopic ablation healed it for me. Now I have a 17 year old daughter whose symptoms are even worse- she misses a week of school each month with pain all over and nausea. First we found out she has polycystic ovarian syndrome. Her gyne here in Chicago won't consider endometriosis, so we did more reading and booked an appointment with xxx and her team in Dallas. (Luckily my husband works for an airline, or we could never afford this). We were lucky also to be given the choice of starting pills to suppress the endo or laparoscopy. I agree with you, why mask the true cause with pills, especially if it could affect fertility later on. Anyhow, all the best to you and may your doctor start listening to you ! You are certainly not alone. Keep us posted on how you are doing, From Mary

[Lauraxoxo in reply to Maryspriggs]

Oh Mary that sounds awful. What a lot for you and your daughter to go through. Seems like it’s not just the U.K. that seems to dismiss endo I said to my friend I feel bad as my pains are nothing to what some feel but I keep reading you can have lots of endo with little pain or small amounts with really excruciating pain. I guess we are all different. I also think in my head what if it isn’t even endo! This whole thing just sucks. I’ll keep you informed when I finally go to the gp!! Xx

[Vixylix]

Poor you - I know exactly how you feel, I had a GP ignore me too when I was 23. I’m 32 now!!

You are always entitled to a second opinion, are you able to see a different GP at your practice? You need to push for a referral to a gynaecologist. Good luck sweetie - stand up for your health xx

[Lauraxoxo in reply to Vixylix]

I am seeing a different gp in 3 weeks and I know the drs being video recorded for training purposes. I won’t be in it but will hear my voice so I am thinking it a real opportunity to make myself heard as it will be played back to people!! Xx

[Vixylix in reply to Lauraxoxo]

Good on you!

[Lucy_x]

Hi Laura, I’m only 18 but have been experiencing pain since I was about 15& after all my mums family having a form of Endo, it was pretty much inevitable and it was something which we thought it could be. I have been to so many drs & some are so awful and make you feel like you’re making it up half the time!!! I just kept seeing new drs until eventually I came across a lovely one who has just recently sent me for a referral. Maybe consider changing drs or asking for a second opinion ?xxx

[Lauraxoxo in reply to Lucy_x]

Thank you. I’m hoping I get somewhere when I see this other dr soon! Fingers crossed anyway! Xx

[Alex9]

It took 15 years for my endometriosis to be diagnosed. I was taken seriously when I lived in London, now I've moved out of the area I just get my gp shrugging his shoulders and offering me drugs to put me in menopause.

Even my ruptured ovarian cyst was not followed up .

I don't know how old you are or your situation but they tend to take you more seriously if you are concerned about your fertility x

[Lauraxoxo in reply to Alex9]

Well it’s funny you should say that as I haven’t been on any contraception for over a year. I’ve had a couple of times I’ve thought bugger but never fell pregnant. Whether this is coincidence or just because I am getting older. I’m nearly 34. Xx

[Dee11]

Sorry you’re having such a bad time with your gp, it’s shocking how some doctors react!

Have you tried taking in a pain diary or something similar? I found that having all my symptoms written down and showing any clear patterns always helped doctors take me a bit more seriously, and being persistent even when they try to fob you off. Being able to show them how it affects your normal life (eg are your work having a go at you, are you too shattered to do anything, etc) and the impact that’s having on you might help too x

[Lauraxoxo in reply to Dee11]

Great idea. Thank you. Xx

[Lizzielizzielizzie]

Look at the NICE guidelines: nice.org.uk/guidance/ng73/c...

Personally I would take a copy to the GP and ask them to talk me through what they are doing in line with this.

[Lauraxoxo in reply to Lizzielizzielizzie]

Very helpful! Thank you. This is good as I’ve had an ultrasound and a transvaginal scan already and it says not to exclude the chance of endo if they are clear in a roundabout way! With this appointment being recorded I think I need to go armed with as much as I can because they will play it back on training and if she dismisses it after all I say there will be grounds for concern on the drs part surely!! Xx