Coping with Ovarian Cyst(s)

Ugh. I didnt see it as a good thing..... I saw it as 'shit, shit, shit... something is wrong!!!!' I had a bit of a cry at work as I was so overwhelmed I had only just got to accepting that if anything was wrong they would have been in touch by now.... Then I had started (for the first time) to get excited about my holiday and I got that call. Unfortunately I can't change my flight as all of the economy seats are taken on the flight, which means I would need to upgrade as well as pay the fees to change I am so freaked out....going to call tomorrow and just ask if there is any way someone can talk to me over the phone just to ease my mind before flying....

I am pleased they have finally given you some tramadol but what a palava!!!! It's great to be able to get emergency appointments but not when they are locums that don't give a crap about you....it was a locum who told me I was five months pregnant when I actually wasn't!!!!!!!!

How cheeky of him to a) call you love and b) imply you are making it up!!!!! I would complain if it was me! I bet you are pleased to hear that the tramadol won't affect your little man??

Oh no what a stress! Surely you could get the appointment moved if they are happy for you to fly and you're not in pain? Maybe you are simply a priority on their caseload rather than your case being urgent if you see what I mean? I don't know though - I'm never really sure how these things work and different PCTs seem to have different ways of working all over the country! Definitely speak to someone and get them to explain and reassure though. Usually departmental staff members can explain such procedures and why decisions have been made in certain ways if not the specifics of your case but obviously better to speak to someone involved in your case

I suppose to give the locum some credit he did actually respond fairly quickly after the initial telephone call and call me back quickly after the botched appt but they're so useless sometimes it makes we wonder what they did at medical school! Not communication skills that's for sure!

To be honest I'm still not 100% happy taking the tramadol and breastfeeding - there is still that doubt in my mind it's not a safe thing to expose him to even in the low levels. I'm happy to be much more comfortable but it comes at a cost that there is an unknown/small risk through lack of research. I did take all the drugs they could give me in labour so I'm obviously not anti-drugs and they weren't entirely risk-free either. I spoke to a breastfeeding support worker tonight as well and they reassured me that their guidance said tramadol was ok, but that's based on the same limited researched I've seen. Typical mum worrying about their baby all the time! I'm sure he will be fine - I wouldn't be taking it if I thought it posed a significant risk. Maybe when I've seen he's ok and full of beans as usual after the morning feed I'll feel better about it

Yes I am sure you will feel much better tomorrow!!!! Did you discuss with your partner? I know you said he was hesitant on you taking it? I think it should be ok.... There can't be much that filters in through the milk. At least it is some relief for you in some way!

I am definitely going to demand speaking to my consultant tomorrow. It's not fair to be kept in the dark when it's about me in the first place. I HOPE that it is just because the cyst has clearly grown since then as even 24th is still far away. The things I have in my mind thought are things like, they know I am going on holiday and because I've said I am back on 24th, they've asked to get me in the first day I am back

Hopefully some more answers tomorrow .... Holiday and health both back in the balance again :'(

Yes hopefully you'll get some answers! Let me know how you get on!

Yes we discussed it all again yesterday morning. He saw how much pain I was in. I told him everything the La Leche League had said and that GPs are only covering their own backs by being ultra conservative with paediatric care, which can only be a good thing really. After the first conversation with the GP and I was due to go back and be admitted to hospital I was really upset I'd have to leave LO and OH agreed that it would be better I stay at home and take painkillers than be hospitalised with surgery so far away. He thought I maybe should get checked over at the hospital as I did that stupid thing of googling symptoms and getting worst case scenario stuff back (ruptured cyst) but I thought the GP would do some checks and then the appt got messed up.

LO seems fine this morning after his morning feed! Certainly not sedated and demanding to go out to the park at 8:30am as usual

I will do. Just trying to build up the courage to call My sister (fortunately) is a nurse and said if I dont get any luck she will call for me as she is used to battling them for her patients.

Glad your little one is still bubbly and doing his thing! I bet you are so relieved! You are like me googling.....I get in so much trouble with my partner and my friends for googling. They really tell me off xx

I called the hospital and she said she had been waiting for me to call back after my voice mail yesterday. She has had a cancellation on Friday which she offered me and I obviously snapped it up. I am going in at 10:45!

So relieved!!! Not being able to change my flights was obviously fate.....it has its ways!!

Going in for your op at 10:45 on Friday?! Wow that's great news! Hope it all goes smoothly

No no not my op....this is just meeting with my consultant. I guess to talk about what the op will entail and talk about my MRI

xx

Well that's still good! Hope it goes well

Me too. Keep your fingers crossed for me!

Hope the tramadol is keeping up its good work for you xx

Fingers crossed! :D

The tramadol is excellent pain relief. It does make me feel groggy though. I don't mind that in the evening but in the daytime it's not so great. I'm on 2 x 50mg doses per day, one in the morning and one as soon as LO is in bed. It would be better if I could take 4 x 25mg doses to spread it out over the course of the day so there's less of a rise and fall of the pain between doses but you're not supposed to break the capsules open or anything. Yesterday morning I was fine til around 11am but then today I got up in pain. I can have up to 4 x 50mg per day but I want to keep dosage as low as possible, especially as it will likely be what I'm prescribed post-surgery for the pain as well so by the time that comes around it's likely I'll have built up a bit of an immunity I was clock watching for paracetamol doses before anyway but now I think I'm more aware of it! I'm literally counting down the days/hours until consultation!

So I am back! I went in and after a long wait I saw my consultant Dr Rafaat. He was so nice and really tried his best to reassure me. He talked over the results from the MRI and what was happening and then did an internal examination (where it basically felt like he had climbed up into my vagina.)

What a delight.

He said he does not think that there looks like there is anything immediately suspicious although they still have to treat it as if there is because it is so big they obviously wont know until after the results are back. The measurements now are 14cm by 14cm which he said is now too big for keyhole surgery, so it will need to be taken out via open surgery That was a bit of a blow but fortunately I had been preparing myself for that because it could have been worse if I hadn't.

He gave me the option of whether or not I have my ovary removed because if they leave it and it turns out from the results that there IS anything suspicious in the cyst, they will then need to go back in and remove the ovary anyway, so I of course said yes just take it. I don't want any risk of it coming back or having to have a second op..... one ovary is obviously enough to have kids. He will also take a biopsy from the other whilst he is in there so that he can check that that one is ok.

When I was done I also had some more CA-125 tests done to see whether there has been any change.

My last ones were 51.

I am perfectly ok to fly and I will have surgery soon after I get back from my holiday!! He told me not to worry now and to go and enjoy myself so that is what I will do! So comforting hearing it from the specialist.

Although it is not great to have open surgery or to lose my ovary, its the best outcome all around that it doesnt appear to be the c word.

Thanks for your support, I feel so much better now I am out.

How are you getting on with the tramadol? Also, any news on any cancellations???? Hows LO? Still his bubbly self?

xx

I'm so glad your dr has reassured you and you can go on holiday! Great news.

Like you I'm preparing for open surgery but have fingers crossed for keyhole as to not be too disappointed if it ends up open. Sorry you'll lose your ovary but it's a good job nature designed us to have 2

14x14cm is big! I fear mine is growing too. What's 51 for the CA 125? Is that really low? My dr never explained the test results to me he just said they were fine.

I'm still a bit spaced out on the tramadol. I keep forgetting things too like what I walked into the kitchen for or the words half way through a sentence! Doesn't help I'm very tired today as I went to bed late and then we got up very early. LO is fine - no effects I can tell as he's full of beans showing off his new walking skills with my mum and aunt today Definitely not sedated!

I am FINALLY excited about my holiday! So nice to have my consultant tell me that it would be ok, that really reassures me.

I definitely think that that is a good idea as I have been told all along that I would have keyhole. Except a fleeting comment that it would be either laparotamy OR laparoscapy (duh) from the gynae.

Yes it is so big now, I pressed it on one side the other day and it was as if someone was standing on my bladder, funny because where I pressed was nowhere near my bladder. It was in my right side!!! It is like a little football now! lol

The 51 for CA125 is the tumor marker..... so they measure the proteins in the blood and anything under 35 is normal. Mine is 51 so it is slightly elevated but if it was cancer he said we would expect to see in the hundreds. So that was of some comfort. I have had another test today to reevaluate and see how we get on.

Can you feel your cyst as yours is big too isn't it? I think you said 8cm before......

So pleased that he is ok and not showing any signs of being sedated. I bet you are pleased?! Pain relief AND a full of beans baby!

x

Yay! I hope you have a great time :D When do you go is it quite soon?

I can't feel my cyst with fingertips (8x5x4cm ish) when I press my abdomen - I can't distinguish between organs and cyst - but I get the bladder pressure too and/or it hurts (more). I can more feel it's there through twinges, aches, pains and pulling. It's a little bit like being pregnant in that I can feel there is something there that isn't usually part of me. When I bend over and abdomen is compressed I really feel the pressure and pain more.

Good that your CA125 is nice and low Hope it doesn't go up significantly.

I'm very pleased LO is ok! Just counting down the days til consultation now (10) and hope that all goes ok. I'm expecting it to be quite straight forward and surgery to be the recommended treatment with around 2 weeks wait but also trying to prepare for both possiblities of a very quick referral and several more weeks wait. I really can't see them not operating with a cyst that size and all the pain! It's just a question of when. I think I have the same consultant as last time - her name seems familiar - so that should help a lot. I didn't have much pre-op chat with her last time as under the care of another consultant on the ward initially but I remember her coming round after the op to speak to me and she was very pleased with her work!