So confused!

[Sylv_99]

Hello,

A few weeks ago I had a CT scan because I was in so much pain which showed a 2cm x 3cm cyst. The hospital sent me on my way saying that I couldn't be in that much pain especially considering the size of it but they'd do a vaginal ultrasound to follow it up. I've just had it this morning and the woman said she couldn't see anything unusual or even the cyst. I've had endometriosis in the past and had a hysterectomy for suspected adenomyosis (leaving my ovaries) and have been pain free since until a few weeks ago. Now I don't know what to do!! I feel like I must be imagining the pain?

[Tillyfloss]

hi. How you feeling? No one else can tell you how much pain you are in and with endometriosis and cysts it's location can have an impact on the pain you are feeling. Have they said what they want to do next? They kept telling me that I had harmless cyst that would go on there own, when I ended up in hospital with the pain I was reassuring told it's my appendicitis after the 5.5 hour I was told I had endometriosis with complex cysts I had no I!

don't be fobbed off keep mithering till you get taken seriously.

good luck. Xx

[Sylv_99 in reply to Tillyfloss]

Thanks for replying! They thought it was appendicitis with me too! Only ruled that out after 2 days in hospital.

They just said they'd write to my gp with the results. I'm just confused about why we can't see the cyst now, why I'm still in pain, whether I could have endometriosis again. I think I'm going to try and see the specialist I saw years ago privately xxx

[Tillyfloss]

hi. They did the same with me I was in for 3 days before they operated I think its a common mistake. Did they say if they saw free flowing fluid? They can burst and its very painful and if that's happened there isn't always much they can see. If your in the position to pay privately I would just for your own peace of mind, we went privately but unfortunately the type of surgery I need is to complex to be done at the private hospital so we're seeing the same specialist but at the NHS hospital he's at.

good luck with it and I hope your endometriosis hasn't returned. Xx

[Sylv_99 in reply to Tillyfloss]

No they didn't say anything about fluid. I think I will go privately, I'm fed up of medical professionals who don't know much about endometriosis! Thanks so much for your help xxx

[kitteh_cat]

My consultant asked my permission to take pictures of my insides when he was doing my lap because he was full sure he was going to find endo and he wanted me to see that despite countless other consultants telling me otherwise.. it was not all in my head ! I will add that he diagnosed in 15 mins what 10years of others all missed. And that was without any scans. He listened to me to every little detail and symptom and he knew just from that what was wrong. You need to find someone who will listen! This isn't in your head! I often had pain that felt like appendicitis but turned out to be from my bowel having been caught up by fibroids and even thou he couldn't see it my consultant found a cyst on my ovary during surgery.

If you are in a position to financially or health insurance wise You're best bet is the private consultant. You are quite within your right to request a laparoscopy to investigate if that's what you feel you need also.

Best of luck with it x

[Sylv_99 in reply to kitteh_cat]

Thank you, I think I will go privately. My husbands health insurance is going to cover it luckily. Thank you for replying and convincing me I'm not going crazy!! xxx

[Tillyfloss]

hi. How you feeling today? Do you live near a bsge centre? We found the specialist and got to see him privately it was a relief to be told the symptoms I was having were typical endometriosis so its well worth taking up the health insurance. Good luck with getting sorted.

kitteh cat I had to smile about the pictures as I've asked them to take pics to as I want to see it, he's offered to video it out as I was so interested in it! Im sorry you had to wait so long to get something done, how are you since the operation? Xx

[Sylv_99 in reply to Tillyfloss]

Hello, not great, the pain was even worse yesterday! I do live near a bsge centre but I think I'm going to see my old specialist privately since he has done my last 3 operations and he is an expert in endometriosis. Can't get an appointment for 2 and a half weeks though!! xxx

[kitteh_cat in reply to Sylv_99]

Sylv, sorry to hear you're suffering but hopefully now you've made the appointment you can get the ball rolling again and finally get some answers x

[Sylv_99 in reply to kitteh_cat]

Thank you. Earliest appointment is 1st June so I've got to hold on until then xxx

[kitteh_cat in reply to Tillyfloss]

Hi Tilly. I was so surprised when he said about the pictures . Its so rare to find consultants who don't just treat the physical but acknowledge the mental side also. My op was in December and I went back January and he gave me a 3 month Decapectyl injection. Last month was the most pain free I've ever been but over the past couple of weeks it's been increasing again so I've made an appointment to see him on Friday. My endo is very tricky because it's sat on my pudendal nerve and in my bartholins gland. Yah me 😂

Did you have yours yet ? That video sounds so like an amazing idea.

[Tillyfloss]

Hi. Hope your appointment goes ok today how has the pain been?

The specialist seemed amused by my interest and it can also be used for training to my hubby thinks I'm bonkers!!

I got a call on Wednesday to say they are planning to operate the end of May, day before our daughters birthday but hopefully it will bring some relief as I can feel the cysts all the time

Have you tried any alternative things for the pain?

Xx

[Sylv_99 in reply to Tillyfloss]

Hello,

Sorry for not replying, I don't know why I didn't see this! Have you had your op yet? I had a laparoscopy nearly two weeks ago and they found severe endometriosis. Was so happy I wasn't imagining the pain! But now worried about the endometriosis returning again and again. Hope you are okay! x

[Tillyfloss in reply to Sylv_99]

hi. How you feeling? Hope your recovery is going well. Did they remove what they could? Hope its improved your pain. You having some recovery time?

I had my operation on may 31st. Specialist was very confident from the ct, MRI scan and photos and notes from the previous operation he said he could easily remove the cysts and remove the endometriosis patches as there was no indication of it being extensive. Boy was he wrong!! Luckily they went in under my ribs due to the location of the cysts and it was good they did as everything was stuck together and covered with adhesion and stuck solid ( frozen pelvis). He managed to free up quite a bit and removed lots and the cysts.it's unfortunately on my bowel and bladder but they had been operating for 5 hours so they called it a day at that. Its made a big difference in my pain so far but I'm on prostap injections. We have been trying for another baby for the last 5years and they said by tubes are kinked and we'd need ivf so we've got to think about it and it'll be discussed at the appointment in September.

have they put you on anything to reduce it coming back? Xx

[Sylv_99 in reply to Tillyfloss]

Wow! That's a lot to find! Poor you! It's a good job we know our own bodies and push for operations. My consultant was shocked too, he thought he was just going to find a cyst or adhesions but found extensive deeply infiltrating endometriosis. It was excised and I had ureterlyosis and a recto-vaginal shave. They said it would take 4-5 weeks to recover so I'm still recovering and trying to make the most of some time to myself to relax. I'm seeing my consultant in august to discuss what to do next. How are you getting on with the prostap injections? I had zoladex a few years ago and hated it xxx

[Tillyfloss in reply to Sylv_99]

hi. Do you have much pain now? Taking the time recovery really helps, I was back working within a month last time but I gave up work in January this year and taking my time to recover has been much better this time and as I'm in very little pain that's helped to.

it shows scans etc aren't reliable, he came to see me the morning after and said the scan had completely misled them and despite his expertise in endometriosis he'd re checked the scan that morning and couldn't find anything to indicate the frozen pelvis and die, he said he'd enjoyed the challenge as it was the worst he'd had in a while! I've got to have surgery on my bladder as its a nodules and my bowel but as I've had to ops in 8months he's hoping not to do it for a few years but its pain depending. The prostap injection has been fine, he basically said I didn't really have a choice as it would be back quickly so I didn't get chance to research and I'm glad I didn't as it's caused me no problem just the odd hot flush! I'll be having the third injection next week. I'm not on hrt with it as we have been trying for another baby so we'll be going through the options in September its just giving my body time to heal and for us to decide if we can deal with the ivf process.

it doesn't agree with everyone but has with me. I'm careful with what I eat too as certain things tend to aggravate my bowel but for the moment I'm feeling the best I have in a year 😊.

are you in the UK?

xx

[Sylv_99 in reply to Tillyfloss]

I'm so glad the prostap is working well for you! I must admit, the zoladex did wonders for my pain!

Yeah I'm still in a bit of pain, I'm hoping it's still recovery pain 🤞

Out of interest, what have you done diet wise? I've had bowel symptoms for a while but they are definitely worse now and I was thinking of making some changes. I think I react badly to dairy.

Yes I'm living in Surrey at the moment, where are you? xxx

[Tillyfloss in reply to Sylv_99]

hi. How you feeling today? I found I took 2/3 weeks to get more comfortable after the lap.

with diet before the op I was gluten, wheat and dairy free and I was strict with it as it really brought my pain on, it's easier enough to do took a few weeks to adjust but we got used to it. After the op I have tried introducing things, I'm fine with dairy but gluten and wheat is still a no no. Try not having dairy and see if it helps.

I'm in Cheshire, off to have my third injection this afternoon.

xx