Do I have endometriosis? Ovarian cysts.

[jodiefoster1977]

Hi everyone, I’m new to this group and I haven’t been diagnosed with endometriosis but I really don’t know where to turn right now, I’m at a bit of a loss. I was wondering if anyone could give me reassurance that I’m not being a dramatic hypochondriac and also how do you broach the subject of endometriosis with a gynaecologist?

I was diagnosed with PCOS when I was 17, I had most symptoms but never suffered with period pain or anything life that’s. Recently, I had lower abdominal pain in early March and was sent to the hospital for exams. I was later diagnosed with a 7cm simple ovarian cyst on my right ovary and told to watch and wait and have a follow up scan 12 weeks later. The pain was so bad I managed to get my ultrasound earlier and had my follow up 6 weeks later when the cyst was 5cm but haemorrhagic. That’s when they decided to refer me to gynae.

Since then I have had such bad pains in both my left and right ovaries I’ve ended up in A&E, out of hours, had to take extremely strong pain killers and buy a ridiculously big pillow to lie on at night for relief. I’ve been finding it difficult to go to the toilet, like I’m straining my tummy muscles and when I wee there’s like a downwards pressure. My lower back is killing. I keep getting really weird discharge too? Its not like my usual periods, some days it’s there, others it’s not. I don’t need a tampon or sanitary towel, it’s just when I strain in the toilet or when I wipe every now and again. For example it was there Monday morning, not on Tuesday, there this morning and not there now. It’s like a bit of bright red blood in with translucent discharge. Sometimes it’s more brown but again translucent and gloopy. Sorry if this is too much info but o don’t know if anyone else is experiencing something similar?

I was told the pain in my left side was “referred pain” from my right cyst. I got my referral expedited and they wanted me to have a follow up ultrasound before my TELEPHONE CALL with the consultant. I understand covid has a role to play but I don’t see how this can be dealt with over the phone.

Anyway, my follow up scan was Monday and my right ovarian cyst is no longer there and I have a 5cm simple cyst in my left ovary now. I still have pain in both sides and again they’re claiming it’s referred pain. But surely it can’t be this bad? The sonographer seemed to think I’d have another follow up scan before my telephone call with the consultant.

I’m just so fed up of being pushed from pillar to post and being in pain. I have a cry at least once a week because of the pain I’m in and the fact that I can’t do anything about it. I can’t exercise anymore either and that’s caused my to gain quite a bit of weight, which isn’t doing wonders for my mental health.

Sorry to have a rant, but I’m just so lost at the moment and I really want answers so I can move on from this. I hate being in this pain everyday.

[hellybaybee]

Awww, poor you, that really sounds horrible. What you’re describing sounds like ruptured cysts. Sometimes you can get a little bleeding from them and it can cause you a lot of pain. Cysts can also cause you pain outside your period and they call that mittleschmerz. I’m not sure about the toilet issues. I know with endometriosis I can have difficulty too because I had deposits on my colon (unfortunately they seem to be back), that being said, I didn’t massively notice until it was removed and everything felt so much better. I wonder if a cyst can cause obstruction if it’s large enough? Hopefully someone can clear that up. If you do have endometriosis, they would only be able to tell through a laparoscopy but if they’re going to remove cysts for you, they will probably look then.

[dodgeviperdiva]

hi hun how's u doing, sorry to hear that ur suffering 🙁 i would get admitted and refuse to leave on the basis of the pain and other symptoms, cysts tend to go hand to hand with endometriosis but not everyone with a cyst will have endometriosis. I hope they will help you soon hun and if you want to chat plz pm me xxx

[jodiefoster1977 in reply to dodgeviperdiva]

Thank you so so much for your support! Xx

[LME5]

Hiya, sorry to read about your suffering It's horrible when you're continuously living in limbo, waiting to be seen and treated by a professional.The pain and discharge could be linked to a ruptured cyst (if the right one disappeared it may well have burst).As for constipation and bladder pressure, those symptoms are linked with endometriosis. However, if you're on strong pain killers like co codamol, that does make you constipated. I can't handle that drug myself for that very reason.

Back to the cysts, you can have endometrial cysts which they also call chocolate cysts I believe. That's how I was finally diagnosed with endometriosis. They said my cyst was endometrial in nature based on two scans - ultrasound and MRI.

If a cyst is 5cm or over they're supposed to operate to remove it. Have the follow up scan and consultant appointment and push for a laparoscopy to remove the cyst. Or at the very least, an MRI. With a laparoscopy, if you have endometriosis, they should be able to diagnose you.

Wishing you all the best x

[jodiefoster1977 in reply to LME5]

Definitely some great advice there! I didn’t know an MRI would be a scan used in that way. I will deffo mention it in my call! Thank you xx

[Midgetpants87]

Hi Jodie. I’m sorry you’re suffering. Your story sounds so similar to mine, we could be twins! I do t get the discharge but I do get large simple cysts, weird bladder pains and lots of back pain. Unfortunately, my cysts (until this current one which is only 4cm) have always been over 5cm and they have NEVER even suggested removing them. They have always disappeared and I’ve known about it bcos it bloody hurt when it burst. It’s is so unbelievably frustrating to have to keep chasing people, I’ve been at it for 5 years now. I’ve experienced the same as you, being sent home with ‘watchful waiting’ and strong painkillers that once caused a fecal compaction so bad that the consultant was very angry with his staff bcos he didn’t need to do an X-ray (which they had) because he could feel my colon through my skin. I’ve had all the ‘referred pain’ comments and also had a telephone consultation with gynae too. I felt the same as you, what good is over the phone? It seemed she was only ringing to decide whether or not she was going to continue with my case or close it down. In the end, I forgives what difference does it make? Unless she wants to operate when I go and see her then it might as well be over the phone. So I would try not to stress about it.

Keep pushing and keep insisting on not accepting just painkillers or my favourite line of all…..”sometimes we can’t get to the bottom of abdominal pain”. It’s difficult being so forward, especially when they’re ‘the expert’. But you know there’s something not right.

I personally plan on making a list of every symptom of every condition I think it could possibly be and highlighting every symptom I do have and handing it to the consultant when I see her.

Stay strong! X

[jodiefoster1977 in reply to Midgetpants87]

Thank you so much for your message. I can’t believe you’ve been at this for 5 years! This is only my 5th month and it’s driving me crazy. Sometimes makes you feel like you’re being dramatic but you know when somethings just not right with your body, but trying to explain that to people is just like talking to a brick wall sometimes. I know what you mean about it hurting when they burst - i remember one day having a searing pain and nearly falling on the floor and wondering what the hell it was and then all of a sudden my cyst was haemorrhagic and not simple so that explains that I think!

I’ve got a symptom diary in the notes page on my iPhone which I’ve found very helpful and im definitely going to talk about that when I have my telephone call. I’ve also got a few questions I want to ask because the information I’ve been given is very weird like “your cyst has swapped sides” and when I ask where the other cyst went they just say “it’s gone” - it’s as if they don’t want to fully explain what’s happened.

You are 100% right though, you know yourself when something is wrong so it’s definitely worth pushing for an answer. As much as they are the experts in their medical field, we are the expert on our bodies aren’t we?

I hope your next time with the consultant is positive and you get further along in your diagnosis!

Stay strong twin x