Pain & High CA125

[MagT]

Hi,

Sorry for the very long post but I am feeling completely overwhelmed and frustrated!

For the last 9 months I have developed severe pelvic pain to the point of being unable to move or talk, i'm sick and nearly passing out. Then sore for a couple of days (but more managable) and sometimes get fever. This used to happen at different points in my cycle but the last few times it tends to happen during/just before or after my period.

The first (out of hours appointment) Dr i have seen was really really rude, and kept suggesting that I just need to go to the sex clinic to be tested for an STD (same partner for 7 years). He checked my copper coil but deemed that it was fine, and discharged me. Swabbed me for BV (had to take it home as they didn't have a fridge?) but failed to give me any paperwork so when my GP practice sent it off to the lab it was rejected.

I decided (after much persuasion) to go back to my gp surgery. My dr was a bit more understanding and referred me for an ultrasound. This showed 1 cyst, 4cm, on the right ovary (hemorrhagic). The next steps were to just keep ordering ultrasounds every 6 weeks or so and ignoring that i am in pain for the time being.

In December the pain has hit worse than before and I actually got a bit nervous so went to out of hours and I was admitted to the Gynae ward. Turns out my coil was dislodged and had to be taken out immediately, and my bloods showed infection so I was also treated for pelvic inflammatory disease with antibiotics. Gave me codeine for the pain. They have also sent off my bloodwork for CA125 and I was assured someone would be in touch with the results. The plan now is to follow up with a consultant as the pain might be caused by suspected Endometriosis.

The ultrasound I had at the hospital showed that my right ovary cyst is still there, just over 4cm, and now i have another 4cm (also hemorrhagic) on my left.

My consultant appointment is booked for the end of March.

I have not heard anything from the hospital in relation to bloodwork -after 2 weeks I have called the number given as was assured someone would call me back, but of course they haven't.

Last week I have put in a request at my GP surgery to investigate and let me know (4.5 weeks after the blood test). My GP (very lovely and helpful) advised that my CA 125 came back high (over 210) and would write a letter to request that my consultant sees me sooner than March. This was at the start of the week, and of course I have not heard anything since.

I feel like every step has been an absolute battle and I honestly feel like nobody gives a damn. I have a full time job which i love and i've never missed a day of work until these episodes of pain, i honestly feel like my life is falling apart.

Obviously the high CA125 now makes me a little nervous about cancer too, and i'm so frustrated that I will probably have to wait until end of march for a 15 minute discussion with a consultant that probably won't resolve anything anyway.

[ckem95]

I’m sorry to hear you’re feeling so frustrated. It is often an uphill battle unfortunately. Keep yourself surrounded by your loved ones and make sure you’re taking time for yourself too. Putting yourself first for a bit is the only way we can push through this shit sometimes!

Try not to let the out of hours experience haunt you. I had a similar experience so I know how hard it is... good that your GP is so kind and understanding and sounds like they are on the ball. Unfortunately it does take some time for them to get that request for an earlier appt through to a consultant... if you imagine all the rearranging that would need doing after it gets from A to Z - what you could do is ring the appointments line from your original letter (the one with the March appt) and ask if anybody drops out last minute that you get a call. You could even mention the request your Dr has put through and see if there are any quicker appointments that have come up. That may ease your mind a little?

In my experience the consultants I have seen have been really effective and worth seeing - if only for 15 mins! Do you know if who you’re seeing is BSGE accredited?

[MagT in reply to ckem95]

Thank you! Yes i am definitely feeling really appreciative that the doctors at my GP surgery have listened - still would've been at square one if they didn't refer me for that initial ultrasound, so they have 100% helped there. Not sure whether the consultant is BSGE accredited - I've had a look on the website and my hospital isn't accredited. Thank you again for the reply, really appreciate it x

[Babywells1]

In regards to the ca125 results, I panicked like you thinking the worst but the Dr explained to me that it's more of an inflammation marker and since endo is inflammation then that explains the high results. I would try not to worry too much about it being cancer although I appreciate the wait for more answers is agonizing!

[BoilerMissle in reply to Babywells1]

Agreed! My CA 125 was 1826 (and my surgery result was "no cancer detected"). DO NOT PANIC about an elevated level as many things cause that in pre-menopausal women!

[MagT in reply to Babywells1]

Thank you, that's great to know! Yes definitely, just want to be seen by a consultant and put together some sort of action plan for treatment. Fingers crossed won't be long x

[Florencenightingale]

Hi MagT, it sounds like you've had the run around!

I was told I had an hemorrhagic cyst by a sonographer and was monitored every few months, i was eventually scanned by a fertility consultant who straight away said it was an endometrioma. Had it removed, it hasn't came back within a year.

My friend had high CA125 and she has just been diagnosed with endometriosis and has been told she has a 10cm cyst. So try not to worry too much about it being anything worse.

In regards to the blood results, your GP should have access to them, i would call up your surgery and ask for the result.

Good luck with everything xx

[MagT in reply to Florencenightingale]

Thank you! Yes, hopefully the consultant will be able to advise on what's happening and we can get some sort of action plan. Thanks again for the reply, really appreciate it! x

[Lindle]

Yes I think it is likely these cysts are endometriomas and they are associated with a raised CA125, especially if they rupture. The pain from a ruptured endometrioma is excruciating. At first it is a sterile environment but your peritoneum can become infected and you can become really ill. I wonder if this has been what is happening. Can you refer your GP to the NICE guideline and be absolutely sure that you are referred to a gynaecologist with sub-specialism in Reproductive Medicine who has a special interest in endo. if they are endometriomas they are usually associated with deep endo elsewhere which would need treating in an endo centre. It is so important that the first person you see is really well versed in endo so as to pick up on this. You need a thorough clinical exam. Has anyone done a rectovaginal exam to feel for any deep nodules - fingers up bottom and vagina?

[MagT in reply to Lindle]

Thank you so much for replying! No i've not had that exam, the only time they've been up there was when i was having an ultrasound and also when they were taking out the coil. I do feel like i've been given the absolute run around, so when I see the consultant I'm going to try my best to be a bit tough (haha) and not leave without a clear action plan. Thanks again for replying, I really appreciate it! x