Been left hanging for pointless ultrasound while my symptoms take over?

[Crafternoongirl]

Hi all!

Does anyone have a rough estimate to how long getting referred to an ultrasound usually is? I spoke to my doctor 9.5 weeks ago about finally asking to pursue an endo diagnosis, after all the previous tests I've had for lots of issues have come back clean. (I've been dealing with assorted health issues since I was 18 and I'm now 30). I was told we'd have to do an ultrasound first, to essentially tick it off the list, even though we both know endo won't show on it. Despite checking in a couple of months back (I was also having to sort an unrelated breast scan that had gone awry, appointment-wise), I've still heard nothing.

My bowel and digestive symptoms are unbearable almost every day and I've had to defer lots of university work (luckily I got a note), and I've had to chuck tons of my clothes because I can't stand the discomfort of wearing them or I'm just too bloated for them now. I'm so tired because nothing touches my most troublesome symptoms, but I've just been left in the dark here. Lots of days I'm stuck in bed or just have to shelve whatever my plans are in a second, and I'm too scared to find a summer job because I'm unwell almost all the time and won't be able to keep up with shifts.

What should I do next? Call and probe about this ultrasound? Or get mad and push for lap right away?

[ZiggyandBC]

Hiya, it took my 5 months to get my ultrasound appointment back in august 2020. The scan showed a 5cm cyst that they suspect is endo which is what led me to getting my laparoscopy in 2 weeks time. It’s been such a long process and I’ve made countless phone calls trying to advocate for myself and make people listen to me. It’s exhausting.

My best advice is to keep calling them, keep pestering them and make them listen, you know your body better than anyone. There may be a chance the scan could show an endometrioma like mine did which indicates endo, but if you’d rather go straight for the lap to cut out waiting time that’s probably the best way.

Personally, I asked for a consultation for a BSGE centre and endo consultant. I also spoke to the endometriosis nurse at the centre who was sooooo helpful. Have a look to see where your nearest one is and you can always get in touch with them to see what their referral process is.

Hope this helps a little, it’s so hard but keep on fighting and you’ll get there xxx

[Crafternoongirl in reply to ZiggyandBC]

Thank you so much for sharing. I've just send another appointment submission detailing the urgency (unfortunately it's the only way to effectively book appointments right now), but I've pushed again to go straight to BSGE.

It's so hard to stay positive when every day is a gamble of extreme sickness, but I will keep trying

[Hidden]

Hi!The ultra sound can show things such as cysts on ovaries, and fibroids. If the technician is really skilled, they can take an informed guess if it's a normal cyst or an endometrioma with blood inside. So, an ultra sound can give some useful information. But, you're right, an ultrasound won't show endometrial lesions in the pelvis.

So, why not try asking? See if the GP can put in a referral for you for a diagnostic laparoscopy for endometriosis, with a BSGE accredited centre. The endometrial lesions can be hard to see, and appear in many different areas in the pelvis - so you want a gynaecologist with experience looking for endo. A traditional gynaecologist without the specialism in Endo may only check the uterus and ovaries - which is not enough checking for Endo.

[Crafternoongirl in reply to Hidden]

Thank you.

My first request was for a BSGE referral (during covid, getting a doctors appointment has involved filling out a little form and waiting for a call from the surgery whenever they have time), but I was told I have to jump through all the hoops.

I think I'd push for someone with a specialism, as I'm thinking it's gone further than the usual problem spots now. Thank you for your advice and encouragement.

[gettingusedtoendo in reply to Hidden]

Sorry to jump on OP’s post, but I’m on a wait list for laparoscopy with excision because I have a large adhesion between my uterus and rectum/bowel. This is with the ‘endometriosis lead’ at a general hospital. Do you think I should push for BSGE? I was never made aware this was an option in my consultation but everyone here suggests that only BSGE should be carrying out excisions? I live in kent but the nearest centres are in London I think. Thank you

[CryBaby91 in reply to gettingusedtoendo]

If I were you, I would yes! Xxx

[vizzle_01]

Hi I'm 33 and only just been given a referral to a gynaecologist but it is a telephone appointment in December 2021 I haven't had an ultrasound only swabs and a blood test. I don't know if they plan on giving me an appointment for an u/s... doctor didn't seem to take me seriously my sister has endo and female family members have had issues ending up with hysterectomies and I have symptoms which have got a lot worse since I came off the pill end of last year...in your position I would try and do as much self help as you can (heat therapy and EMS/tens machine strongest pain killers) whilst you push the GP. Hope you get a scan soon xx

[CryBaby91 in reply to vizzle_01]

If you can afford a private consultation that's 100% worth looking at love! But I second the TENS machine, I love mine xxx

[CryBaby91]

Hey sweetie, gosh I could have written that myself! So strange! I'm 30 this year but have been dealing with pain from early teens, dehabilitating pain from around 18/19. Also done all the hoop jumping testing for allsorts of autoimmune diseases and basic mental health stuff 🙄 because obviously depression causes me to be bedridden with pelvic and lower back pain 🙄 doctors suck sometimes!

Anyway, I went through the faff a few months ago of doing the ultrasound and getting a referral to my gynecologist at my local hospital. They are not endo specialists at all so I was concerned that I wouldn't get anywhere but figured I had to try or i would never know. Well....I got nowhere. They did the ultrasound and because it was clear they said a lap wasn't necessary 😳 in their mind if I had endometriosis it would have been on the ultrasound, which we all know is utter utter bull. He denied that endo can cause blood in your urine during a period, said my bowel issues and bladder issues were seperate from the period issues and referred me to another specialist for that. He made me cry in the end because I refused to go on the pill without a diagnosis, he told me I go online too much and to stop reading things on endometriosis UK because it's not accurate. Ugh. 8 month wait for that, unbelievable.

So, I've taken matters into my own hands and I've got myself a private appointment at my own expense (£170 for the initial consultation), he's a BSGE registered specialist and specializes in severe endo which effects the bowels/bladder. The centre has rave reviews and the gynecologist has been in the newspaper and done countless research papers on endo. I have my appointment next week and I'm finally optimistic that I'll be helped after all these years of pain. If you're frustrated like me babes I definitely recommend just jumping in two feet and pay for it, then you call the shots! My guy has an NHS list too which he transfers you to for surgery if needed, so I won't have to pay private for that. Might be worth searching for the best endo specialist near you and paying for that first appointment!

Pain relief wise, have you tried a TENS? Doesn't take it away but it's a good distraction also heat, in any form! I have a heated pad that I plug in and 2 hot water bottles one long one for my back pain and one small one for my belly.

Apologies for the essay! Hope I helped

[Crafternoongirl in reply to CryBaby91]

Hiya!

Thanks so much for sharing your story with me. It all seems familiar!

I've gone private for diagnosis and been referred back to the NHS previously for other stuff (mental health disorder things), so I'm happy with the concept.

I'm horribly unwell today again so I'm about ready for anything! Would it be possible to get some more info on how you arranged the consultation, or where I should start please? I have the pocket money waiting after I did some maths!

I've previously used a TENS machine back when I got menstrual cramps a lot, but despite cramps always being there at a background level, that's unfortunately not what's plaguing me as much these days. It's more every step of my gastrointestinal system barely working correctly, but medication won't touch it. It feels like my body is using all it's energy on that every time it flares up (which is now pretty much daily), so I'm just a big sad mess. :') I'll have a go at using more heated stuff though!

[CryBaby91 in reply to Crafternoongirl]

Absolutely no problem sharing how I did it so first I went on the BSGE register and I looked for registered centres in my area. That helped me find 2 practices that have endo specialists and the names I then googled them both and had a look at their CV (It shows what specifically they specialize in and how long etc) and chose the best fit. Then I just went through their private firm, made an enquiry online and they phoned me back to make the appointment 😊 was super easy! But yeah, best advice is to search for BSGE registered gynecologists in your area then find out where they do their private practice and arrange the appointment through them

I can definitely empathise there, I'm struggling with food at the moment and if I lose any more weight I'm going to blow away! I've gone from being over weight after my second child (13st13lbs) to a skinny Minnie lol I'm like 9st 2lbs now 🥺 I didn't mind at first, was a bit of a silver lining to lose the excess weight, but now (other than the endo belly) I'm concerned I'm losing too much. Can't win 🤣 hard to eat though when you're bloated, constipated, cramping and nauseated!

Heat is definitely the best one for me, I know some people are different and find cold works well, so maybe try both and see what's best? Xxx

[CryBaby91 in reply to CryBaby91]

Don't know if you saw my post but my private appointment went FANTASTIC and I've now got a 3 month wait for a lap on the NHS with the specialist 😁 xxx

[TennisAM]

I would push for a referral to an endometriosis specialist bsge centre if you have one nearby. That would be the most beneficial option. I wouldn't take no for an answer. Gastroenterology referral would be good too if not done already to rule out anything else x