Coping with Ovarian Cyst(s)

I have not heard anything after my MRI, which I am happy about. No news is good news I think!

Perhaps we will end up going in at similar times after I get back. My next gynae appointment is on May 8th! xx

I don't know Maybe the advisor has had a really stressful week of constant pain and trying to navigate an insanely bureaucratic system to get medical care that will massively change the next 4-6months - I know that makes me pretty irritable! She wanted to know if the referral had been sent by post, fax or Choices website - something the GPs don't enlighten the mere patients about. This annoyed her that I didn't know and she tutted and sighed like I was wasting her time. It's terrible people like that end up in jobs they aren't suited to. HR people without a grasp of basic maths or necessary people skills, customer service people who hate people, etc. I'm going to phone back every day next week. I will know them all by name before long. Today's grumpy woman was Carol.

I think you're right about scan/test results that no news is good news. When I had my bloods done and they said I'd hear within 2-3 days I asked if I would hear anything at all if the results were negative and that was the case, and they confirmed at the last appt.

I don't think there's anything I can do whilst the referral is being processed except keep checking back with appt centre. It's awful in this state of limbo. At least when you have an appt date it's a countdown to get through the days rather than the abyss ahead

On a positive note I had a really sweet email from my supervisor at uni today in response to my surgery news (I said I would keep at it until surgery but then be out of action for a number of weeks depending on type of surgery) - he said to take it easy and not worry about keeping to timeline to thesis submission as that would just suspend and pick up when I'm back. He said to start my period of suspension (sick leave) now unless I really didn't want to. I don't know what to do about this as having something to do and deadlines to complete thesis sections by is keeping me positive and not receeding into utter despair, however it's really hard work concentrating through the stress and pain. I could always work on it on sick leave but I don't think I'd have the motivation. I work well to deadlines and we're due to meet on Monday afternoon to discuss my progress. He won't be in the office until Monday now anyway so I have the weekend to mull it over but would appreciate other people thoughts on it

I got an appointment letter through this morning!!! It was for the choices website where you book on yourself and the next available appt is 14 April which isn't great at all but at least it's an appointment! I'm going to phone the appt centre on Monday and see if there is a cancellation list or anything like that because 2 week wait just to have the consultation is going to be hell. On the website it said something about once the appointment is made and gone through to the consultant they may offer an alternative appointment depending on the specifics in your notes, so it's possible they may fit me in sooner with the pain although I know it's unfortunately common for patients to be waiting weeks in pain. I'm so relieved it's actually come now but disappointed I'll have to wait so long Fingers crossed I don't get Carol again on the appt line!

Oh how lovely that you had such nice support from your supervisor. Its nice to take that worry off of your plate. You could always try and do some bits on sick leave, it would only benefit you. Plus it would give you something to do and keep your mind off of things. No point in delaying it if you can get it done anyway? You will only regret not cracking on

Glad that you have had your appointment letter! Thats really great news! Not so great that its 14th, but thats not that far away when you think about it. I def think you should call up Carol and badger her every day.

I would definitely stress how much "agony" you are in (inverted commas because I dont know if you would call it that severe or not) but it wouldnt hurt to say that.....

I am so grateful that I am not in any pain but that kind of raises a lot of questions for me as well. I dont know why everyone else seems to be in pain but not me? Not that I want to be, but I hope that that is not a bad sign that it is something untoward

Well I emailed my supervisor this morning and said I better sign off sick as not getting anything done and mobility reduced with problems driving now so I can't really go to my supervision on Monday. So if I do manage anything done whilst on sick leave that will be a bonus. I think I didn't want to fully admit I'm 'ill'. But it's done now bar the paperwork tomorrow.

I think the pain is the luck of the draw so to speak. I had no pain prior to A&E admission last time and only in the lead up to surgery started to feel unwell at all and that wasn't pain like this it was general malaise and achey but I could take cocodamol then. The cyst was bigger last time as well. Maybe the very big ones are weirdly less painful?!

I'll update on what happens with trying to speed up the appointment tomorrow

Ohh the bureaucracy is just so frustrating! I called the appt centre again this morning and they said they would only be able to offer me the appts that I could see on the Choices website and I would need to get the GP to request a more urgent appt to see the consultant quicker. I phoned the GP and have a telephone appt booked for tomorrow morning which is the soonest they could fit me in. I know my situation isn't 'urgent' in the scheme of things but I'm so fed up with the pain. I discussed taking tramadol with OH again last night and we're still both not keen for me to take it whilst breastfeeding as there just isn't enough research into the effects to risk it. I really don't have any choices at the moment. Stopping breastfeeding now to take pain relief whilst surgery may be 4+ weeks away is not an option. We just keeping going round in circles and ending up back at the same wait-in-pain option

OMG what a nightmare! I feel for you I really do....can you not use heat pads or a hot water bottle for the pain? I always find heat helps with most things.

I know what you mean with the sickness....It comes in waves for me. I will be fine and then all of a sudden want to puke! I havent actually done that yet though!

What was the appointment date that was on the choices website? Your Drs sounds very swish....I cant log on to anything! hahaha

I think you should complain that it is growing and protruding out of your stomach and you need something more urgent!! xx

Yup I have my hot water bottle as permanent attire pretty much now! It does help the back pain a little but not the shooting leg pains.

The earliest appt on the website was 14 April which I booked and then the other choices were in May. I'd never used that system before.

I definitely need something doing as can't continue like this for 2 weeks! I had LO by myself all day today 6am-3:30pm and I'm so much worse with the pain and fatigue now it's really taken it's toll. I have more help the other days this week now thank goodness! I'm going to be the worst demanding pateient tomorrow I can tell! Hopefully he won't try and fob me off with tramadol again although if I feel like I do now tomoorw I'll be very tempted to take it

OMFG I came on my period yesterday and in the night had bad cramps but this morning I'm in agony! They are like early labour contractions!! (When I say early stage I went into labour with contractions 3 minutes apart and had none of the pre-labour crampy stuff). I'm not pregnant/miscarrying now anyway - HCG levels done in bloods and period bang on time.

These pains have me doubled over in pain crying and I have I can't sit through them (sitting is a problem anyway for too long).

Do you think this warrants emergency care? I'm pretty sure they are severe period cramps as opposed to anything more sinister but wow they really hurt! The GP is calling me in 2 hours anyway.

Oh, I get the same thing. I have been in complete agony for the last three months or more every time I have come on!!!! Its been AWFUL for me so I feel your pain!

I would definitely speak to the Dr as I think (not that I know this as fact) but from my research, cysts are more likely to rupture or twist when you come on. You've probably spoken to the Dr now anyway...what did they say?

I get the shooting leg pain too do you get any numbness in your legs at all? I seem to have that on and off on the right side....

xx

The GP has asked to see me 2:20pm and said that the referral 2 weeks away is the quickest referral even for cancer patients. He initially said I could take cocodamol but then said it wasn't safe. He said because of the pain he could admit me to hospital today. I'm so scared

I don't even know what a hospital referral is going to achieve. If they are just going to give me pain relief and send me home until 14 April I might as well take the drugs at home and stop breastfeeding temporarily. If they admit me for tests/observation I'll have to stop bf anyway unless so that seems pretty pointless. If it means seeing a specialist faster and getting a surgery date faster it might be worth it?

That is good that he is happy to admit you to the hospital? Would you not go just for the sake of getting some faster treatment?

I think it would be a good idea....

I have just had a call from the hospital and they said my case was discussed yesterday at their meeting and they asked to bring my appointment forward to 24th. (My original appointment was 2 weeks later on 8th) I am terrified!! The 24th is the day I get home so i am going to try and get my flight changed and catch an earlier flight..... I feel sick!

Good news for you even with the flight change - that's progress?!

I've had a right do with the GP today. I turned up for my 2:20pm to find he had booked my appointment at the wrong clinic as he's a locum and doesn't understand these things The receptionist was very apologetic. I was asked to go back at 7pm.

I phoned La Leche League and got some advice from them. They said what a lot of other people including midwives have been saying - that although there is very little research - what little information available indicates that tramadol has no known side effects and levels in breastmilk are lower than prescribed infant doses, and LLL also pointed out that at 2 bf per day at 13 months old the dose transferred in breastmilk will be much lower than the babies in the (limited) studies. So I asked the GP to prescribe me tramadol.

He called me back and said tramadol wasn't safe whilst breastfeeding. I told him about the research LLL had referred me too (which others had and I'd already looked up) and he said that didn't matter as his guidelines come from one book and he couldn't take any other non-sanctioned evidence from other sources. Throughout this conversation he continually interrupted me and talked over me. Very rude. I asked about the point in the hospital referral - whether they would speed up my appt with gynae/surgery or just give me pain relief and send me home and the GP said they would probably do the latter. So I said well what are my choices then? I can't cope with the pain. I haven't even been referred for surgery yet and that is likely to be 4+ weeks away. At this point he asked me to describe the pain so I told him about the constant lower back pain, the shooting pains and the severe cramping this morning (which has actually subsided now but still a bit twingey). He then insisted that shooting pains in the legs was not related the ovarian cysts and asked about problems with my back. I've never had back problems and said I believe shooting pains in the legs is common with ovarian cysts and consistent with my diagnosis. I said I wanted to keep bf hiatus to a minimum after surgery and 4+ weeks not bf before surgery was too long. He then asked how old LO is and when I said 13 months he said oh I thought your had a *baby* that makes things different! And preceeded to lecture me and how stopping breastfeeding for even a short term at his age would probably cause my milk to dry up (he didn't use those words, it was a long winded way of saying it). I said yes, that's why I'll be pumping and throwing it after surgery for the short term. He said good good and seemed to change tact and say well I will prescribe you tramadol but only in a low dose and you must watch for signs of sedation and breathing difficulties etc.

I understand why they are not keen to prescribe whilst breastfeeding, and it's not my first choice either but if he's not prepared to put my referral through as urgent then it is second choice rather than make LO go cold turkey off the bf. I waited til LO went to bed (double extra long bf tonight before he setlled!) and taken my low dose and it has really helped with the pain. Better to monitor him in the morning for adverse reactions then when he's asleep!

It frustrates me no end that GPs have such little specialist knowledge yet are incredibly arrogant about patients' health based on one book of guidelines.

Oh I almost forgot, he actually said "if you *are* in that much pain" as if I might not be!! How awful is that?! To be undermined by your GP, suggesting you're either imagining it or lying?! And he kept calling me "love".