I recently had an appointment with gynae to discuss my symptoms. Endo was found during my Caesarean section last year after years of complaining to doctors about my symptoms and being fobbed off. At my recently appointment they reluctantly agreed to give me a laparoscopy but the doctor still dismissed a lot of my symptoms. I’ve always had burning shoulder tip pain during my period and as soon as I stop bleeding it disappears until the next month, doctor said it’s not related to endo. I bloat CONSTANTLY. No matter what the time of the month, I suffer bowel cramps and a mixture of constipation or loose stools, but the doctor also said this wasn’t related. I’m constantly exhausted and my mood is constantly up and down. Does anyone else have these symptoms regardless of the time of the month?
Laparoscopy and diagnostic advice - Endometriosis UK
Laparoscopy and diagnostic advice
I have pain almost every day lovely I hope they referred you to a specialist in endo x
Thank you for your reply. Really helps knowing I’m not the only one. X
When is your lap is it with a bsge specialist do you know what stage endo you have x
I’m on the waiting list, they said 8-12 weeks. I don’t know who the surgeon will be or anything because it’s on the NHS, I assumed you just get what you’re given? It never occurred to me that I could ask for a specialist. They never said what stage it was following my caesarean, just that they’d found it on the uterus, ovaries, tubes and ureter. X
Ooo I really would investigate more I was offered a lap but on investigation found that they have no specialism in endo and I’ve made a point of seeing someone privately be careful because if the wrong person does surgery you might make things worse they wanted to open me up and check they said they would treat me but their not specialist so im not going ahead with it they will probably just burn it and make it worse
Yeah? Aw that’s interesting, I’ll need to look into it a bit more. I just can’t afford to go privately at the moment. X
But you don’t need to you just need to get a referral
Hello
So all of them could be related to endo. Shoulder pain I think is related to it being on your diaphragm which isn't very common. And with your bowels and exhaustion it can be related too but could also be a food intolerance you aren't aware of or something.
Make sure that your surgeon has an interest in endometriosis as not all gyneacologist are created equal when it comes to endo. You can usually find out from a quick Google.
Thank you. I’ll have a look. Would I have to go private to find a specialist or could I get that on the NHS too? X
I have all of these symptoms and I was diagnosed via laparoscopy yesterday with endometriosis on my urethra.
I experience a painful tip in my shoulder when I feel bloated around my period - I’ve been told that this is referred gas pain, I guess try and cut out fizzy drinks/ find food intolerances and maybe try and find medication which will relieve this.
If this isn’t endo-related, then how is your doctor explaining these symptoms? The fact that you’ve had a caesarean and they’ve seen your endo already, this surprises me that your doctor isn’t assuming it’s that. Also no wonder your mood is up and down - the whole process and the unpredictability of endo is exhausting!! I hope you get some answers you need x
Thank you for your reply and your kind words. She didn’t offer any explanation to the shoulder tip pain but did suggest IBS on the other symptoms. That’s really interesting about the referred pain, I’ll speak to my GP about something to hopefully relieve this as it is one of the worst symptoms I have. X
Yes, of course. Your symptoms are very consistent with endometriosis. I strongly recommend you see an experienced and highly skilled excision surgeon ASAP.
In the meantime, you can adopt lifestyle and dietary changes to ease some of the symptoms, especially fatigue, mood swings, bloating and constipation. Eating healthily (plant-based, whole 30 or semi-paleo), moving everyday (light walking is fine), sleeping between 9 and 11 hours per night, taking supplements (vitamin B6, B9, B12, selenium, zinc, magnesium, possibly iron, other vitamin Bs too) are very helpful things you can do as you wait for the appointment
Thank you for your message and for the advice, I can definitely make some of those changes. I didn’t know a plant based diet could help too, so interesting. Thanks x
Eating healthily helps with almost any chronic condition. Suggesting IBS when you clearly have endometriosis is very superficial. I strongly recommend seeking a specialised physician to help you given that non-specialised physicians are not trained to treat endometriosis.
Hi there, if you have confirmed endo under nice guidelines you have a right to be seen by a gynae with special interest in endo. Unless your endo is complex or severe or previously resistant to treatment, you unfortunately won't meet the NHS guidelines to be referred to a bsge centre. This is because they need to be exceptionally strict with who they take on in the Bsge centres as the surgeries they perform impact their accreditation etc. But you can refer yourself privately to a bsge specialist. You just won't be able to have surgery in a bsge centre unless your surgeon referred you. I hope this makes sense. But anyone with confirmed or even suspected endo has a right to be seen by someone with, at the very least, a proven special interest in endo.
Thank you for the information, really interesting. Yeah that makes sense, just need to wait and see what’s found at my laparoscopy really. X
Good luck. I know we hear a lot of horror stories but honestly a lot of people with mild to moderate endo have surgery with regular gynaes and are just fine and the surgeons are able to manage it. Every case is different obviously but I wouldn't be going down the route of paying thousands for private surgery until as you say, you know what's happening. You wouldn't even need to pay if you were found to have severe endo anyway, you'll qualify for a bsge centre. Best of luck. Be sure to ask them what the plan will be if it so not endometriosis found. Always good to prepare for that and to ask in advance so you'll know your post op options if you don't have it. And definitely ask for extensive pictures to be taken (which they should do anyway) so you can ask a second opinion if needed. Finally, it's always good to ask the surgeon prior to surgery where they plan on checking. Ie what areas, extra pelvic etc. That should indicate they depth as to what they will be looking for. Take care
Great thank you! I just assumed they would check everywhere but you’re right, I guess it’s worth actually asking where they plan on checking in case they just go to where it’s documented previously. Asking about post op options is a good plan too. Thank you again! Starting to feel quite positive now about it all. X
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