Advice please.

[rml93]

I’ve found this forum following a hospital admission for severe right sided pain. I was admitted with suspected appendicitis following a visit to an ooh gp on Saturday night, the only time I’ve felt pain this bad I was in labour. It was excruciating, I was vomitting, couldn’t stand /walk without doubling over and over the counter pain relief was not touching the sides. It started intermittently the two nights previous, but then became constant. I had an ultrasound scan and the following was reported -

US-The right ovary contains a 32 × 31 x 28 mm avascular homogenous lesion - appearances are suggestive of an endometrioma. The right ovary also contains a few small simple cysts as well as a 17 mm thick-walled cyst with slight peripheral vascularity suggestive of a corpus luteal cyst. Heterogenous axial uterus seen - no fibroids detected. Endometrial thickness = 14 mm. Nabothian cysts and 2.5 mm trace of fluid seen in the cervix. Left ovary was not visualised.

My bloods were completely normal showing no signs of infection so appendicitis was no longer suspected. I was referred to gynae and admitted for pain management and now discharged with a scan in 4 months time. They have basically told me to take pain relief and it might go away on its own. The pain has lessened but not to a point I could go back to work or look after my kids as normal.

I have no history of endometriosis or any issues until now. It has been 2 weeks since the first day of my last period, which was my current normal in terms of pain and bleeding. I’ve been having very heavy periods (bleeding through super tampons within an hour) which I’ve been to the GP for, but I’ve also got hypothyroidism and was told this is common. Pain wise it’s always been manageable and what I’d consider as normal. I do get pain during sex, but this has been since having my 2 children and I haven’t thought much of this until now.

Feeling quite let down and also no real experience or knowledge in this area so unsure if this is normal. The doctors didn’t seem to think a cyst of this size would cause the pain, but also weren’t too concerned about investigating what actually was. So here I am!

Considering a private consultation if I’m still in pain after the weekend or going to my gp, I just feel like I don’t really know what to say or ask for and I’m being dismissed. I work full time and have 2 children, so this wait and see approach isn’t really a good enough option!

Thank you in advance for any advice or experience that can be shared to help.

[Tangoandmax]

Hey, I’m so sorry to hear this has all appeared out of the blew for you. Unfortunately treatment/attitude you have received this far is completely normal for medical staff regarding gyne issues - it’s unacceptable.

You’ll need to be referred to a gyne for full investigation and treatment. Pain during sex, heavy periods are symptoms of endometriosis and the fact that an endometrioma has been seen on your ultrasound indicates you should be referred to an endometriosis specialist. You could visit your GP to get the ball rolling with the referral but current NHS waiting lists are horrific therefore, if you can afford to go private, it’s absolutely worth getting a private consult with an endo specialist - you can take scan results with you to get their opinion and advice. BSGE Accredited centres are the best, if you Google, the BSGE website details the location of the centres and their specialists.

Just for a little reassurance, pre taking contraception my flare ups would happen around ovulation and would leave me unable to be upright for days. Which sounds a lot like the pain you are experiencing. Hot water bottles are your best friend.

Hope the pain improves soon!

[rml93 in reply to Tangoandmax]

Thank you so much for taking the time to reply, and for the information.

I very much felt like as soon as they saw the scan results and that it wasn’t an immediate ‘emergency’ as such, I was just made to feel like it was something insignificant. I saw quite a few doctors while I was there, some more sympathetic than others, but being discharged with no real answers or plan was quite worrying!

They mentioned contraception options, but I’ve avoided anything since I had my children, as I experienced postpartum psychosis after both births, so try to avoid additional hormones! Perhaps worth looking into if it helps though. The doctor did say to wait and see if it happens around this time next month before trying that.

The hot water bottle was the only thing that offered a bit of relief at its worst! I was sandwiched between them. But they wouldn’t fill it up at the hospital!

Thank you again for your help.

[Tangoandmax in reply to rml93]

It’s honestly beyond frustrating going to urgent care/out of hours doctors for pelvic pain. They rule out infection and then off you go to hope for the best.

I completely understand concerns re. Additional hormones. Generally speaking progesterone only is better for endo, but this makes me suicidal. I’ve spent some time trying to find a pill which agrees with me which means I’m now on a combined low dose (Mercilon) which seems to be working ok. Anything to stop ovulation and hopefully hider any further growth.

Good luck. Make sure you’re firm with them, they’re great at brushing gyne issues off, but if it’s severely impacting your day to day life, (which sounds like it is) fight for proper investigation and treatment!

[ClaudiaGrace]

Hey,

That sounds like a real rollercoaster experience. The sudden onset of your pain does sound unusual but the condition can act in all kinds of strange ways. It definitely sounds like you have stereotypical symptoms too.

If you haven’t been referred to the endometriosis specialist at your hospital then you can ask your dr to do this, but they have quite long waits at the moment it seems so you may still want to pay to see a private consultant, I did for peace of mind and it was money so well spent. You can find consultants working in BSGE registered centres here and if it’s an nhs centre they often work else where privately if you google their name bsge.org.uk/centre/category...

I would also recommend sourcing a private ultrasound to make sure that what they’re saying is correct. I had 3 ultrasounds on the nhs and one MRI showing my ovaries were stuck and the specialist ultrasound showed me they clearly weren’t. Generally radiographers are not well trained to detect endo so are bad at it.

Once you have all this info you may decide to go down the surgery road or you may decide to manage with medication, nutrition and physio, or both. Womens health physios can be super helpful, chloestevensphysio on insta is a good place to start and a womens health specialist nutritionist can work wonders too. The book heal endo made me feel very empowered re managing myself.

Really hope some of this is useful,

Take care

[rml93 in reply to ClaudiaGrace]

Thank you for taking the time to reply.

I was quite surprised that as soon as they saw what they saw on the scan, they ran with this as the cause of the pain and didn’t look into other possibilities, particularly as this was a sudden onset.

The pain has subsided a lot now, I’d say I’m just feeling normal period like cramping. So I guess I will just wait to see how the rest of my cycle/next cycle pans out and consider private options should I experience further issues.

From what I’ve read and researched so far, the thought of endometriosis really scares me, purely for the way women experiencing this seem to be treated. It doesn’t seem fair.

I did wonder about the ultrasound, since it was on the antenatal clinic I guess this is their speciality! He did immediately ask if I knew I had endometriosis when he saw the cyst though which I thought was strange (since they were looking for appendicitis!)

I will have a look at your recommendations too, thank you!

[the4ts in reply to rml93]

The first time my endometriosis was picked up was by a midwife who was being trained by a radiographer in taking and interpreting ultrasound scans. She then spent ages talking to me about symptoms and how experiencing such pain wasn't normal and you could tell how annoyed she was that I was led to believe it was. I was very lucky and she was amazing. I hope you get on the right treatment path quickly and things get easier for you soon.

[ClaudiaGrace in reply to rml93]

No worries at all, I’m sorry to hear it sounds scary, it is, but I do also think there is rightly a lot of noise being made about it currently to improve care meaning particularly negative stories are amplified.

I’m not sure re the antenatal clinic being specialists in endo detection you know, I had 3 different scans from 3 different nhs departments and they all said my ovary was stuck and I’ve now been clearly shown it’s not. The impression I got was that the nhs was not willing to train staff properly in the detection of endo meaning there are very few people trained to detect it accurately sadly. That doesn’t mean your scan is wrong, I just personally wanted the most accurate info because I was deciding whether to have surgery or not. So just worth considering if you get to this point.

[rml93 in reply to ClaudiaGrace]

Yes sorry I meant they would be specialist in antenatal scans! Not something like this. The strange part is they only scanned one ovary, I guess because that’s where I was experiencing the pain, but it would have been more useful to have a full picture I guess.

I’m glad people are starting to be listened to more. I’m still uncomfortable, so just going to go to the gp next week and explain this and that I’m not ok with the plan of waiting 4 months for another scan. And depending on where I get, look at private options.

Thank you again!

[ClaudiaGrace in reply to rml93]

Ahh sorry of course, apologies I read it wrong. Very strange they just scanned one ovary, particularly if they suspected endo. Good luck with it all, hopefully you can get some clarity and direction re treatment/management, it’s so unnerving not knowing what’s going on in there and having unexplained pain.