Hello all, I’m hoping someone will be able to help as I’m feeling so frustrated and not listened to.
Since being around 12/13 I have experienced horrendous periods, debilitating pain, fainting, vomiting, fatigue, bowel issues and a whole host of other symptoms which have never been taken seriously by my GP. My GP has suggested a number of times that it is endo, but doesn’t see the point in treating other than using the contraceptive pill/coil. I have tried every pill available, I really struggle with low mood and they just don’t agree with me. I have always been reluctant to try the coil with it being more long term due to my previous experiences of contraception.
I’m now 26 and I had my first referral appointment yesterday and the Gynae said that I must try the coil and there is no point in going to my follow up apt in 4 months time if I don’t have the coil fitted by then and I would be discharged. I was really upset and voiced in my apt that I need to know what is causing this issue, rather than just masking and wanted a laparoscopy but she said I am too young and it comes with risks when the coil can just help the symptoms.
I also have constant left sided pain following a miscarriage (unplanned pregnancy) which when the gynae examined put it down to my bowels - i truly believe I have endo in my bowels which causes my constant bowel issues (constipation, pain, blood in stool) which I can’t imagine will be cured by the coil?
I’ve had ultrasound scans all around the abdomen and a transvaginal scan, full blood work and there are no abnormal findings. I feel like I’m going insane and don’t know what to do - I feel pressured to get the coil, but feel like that’s not going to provide answers and realistically I need to know if endo is causing bowel issues or if there is something else going on. Has anyone had this kind of dismissive response? I was trying my best to explain how much of an impact this has on my life but she didn’t want to listen.
If you got this far, thank you for reading and thank you in advance for any help♥️
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Nvinc
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You are not too young for laparoscopy! I would suggest to change GP if that's an option as this one seems seriously negligent. You deserve to be heard!!
I’d ask for second opinion. Also there’s several Endo research groups on Facebook that have files on treatment pathways so you can find out your options when navigating the NHS. It sounds like your GP has listened and sent you for tests and a referral to a gyanae, but not all gynae are endo experts and not all ultrasoundist are trained to be able to identify endo (also only advanced disease shows on a ultrasound) so less severe disease won’t be picked up even by someone fully trained.
Nancy’s Nooks Facebook group recently did a post on redirecting a conversation if a consultant isn’t listening, and also how to ask for a second opinion if you need to.
Medical gaslighting is an all too real issue. It sounds like you’re really struggling please make sure you follow up and get the care you deserve x
You're not too young, I had my first at 17 and had 4 completed within 2 years. Because we're woman and this relates to our fertility you will find doctors put they're opinion on our bodies which makes the process 100x harder than it needs to be! I'm proud if you for sticking up for yourself, it's very hard to do that when you're already vunerable.
Have they already done imagining? Might be able to find the cause without the need for surgery with MRI / ultrasound? They've always seen mine on images so thankfully don't need as much surgery anymore but I know other ladies aren't so lucky.
If they won't listen then demand a 2nd opinion which you are entitled to. Wishing you all the best x
Hello! I’m also 26, in the UK and have been through the same stupidity they’re putting you through- even the whole coil business which turned out a waste of time. It takes a bit of gumption but I’ve simply refused to leave the drs room without them seriously considering laparoscopy. It’s total bull that you’re too young. We’re the same age, under the same healthcare system and I’ve had three laps so far and I’m scheduled for a combined surgery with uterine and bowel surgery.
I’ve been clear I am not interested in masking the condition but rather treating it. Talk about the impact it’s having on your mental health and that you are fully aware of the risks, but that you know the care option is available and you are eligible. Call PALS at your hospital and maybe Citizens Advice Bureau for some backing up from people who know the right jargon to get you through the door xx
Hey 💜💞 I'm sorry you're going through all this, you're not alone! 🥺 If possible, get a second opinion and ask for an MRI - I had painful bowel movement during periods too and my gynae allowed for an mri due to that. He referred me straight away to a specialist after he saw the results - which is endo in the bowel among other places -- this wasn't seen on the ultrasound!
you are not too young for lap honestly as I had a girl next to me who was 17-18 when I went for my lap your not too young. Maybe she wants to try all options as a lap is invasive surgery and does come with risks. Also the coil has risks too. Hope this helps
Hi! You’re not too young for a lap, I just had mine at 22 years old. Also, from my experience they generally want to try every treatment before resorting to a lap, I had to be on every birth control and different pain killers that didn’t work before I was referred for one. If you really don’t want the coil though, you don’t have to have one as it’s your body! Keep pushing for a lap and I hope you get the answers you need x
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