Apologies for the length of the post, but I'm so upset and feel at a loss...
Had post-lap follow up today: gynae said they'd found a small cyst on left Fallopian tube but it wasn't responsible for the severity and distribution of the pain I'm experiencing - to do anything with the cyst would risk damage to the tube, so he feels it would be dead end persuing this avenue.
I'd tracked my pain and plotted it against my cycle - it's undisputedly connected, so I'd recently changed from combined pill to POP to try to control symptoms.
But here's the thing - I desperately want to try for a baby, gynae knows this so did a dye test (tubes are clear) - it was being off the pill that made all these problems come to light but I went back on it until I could find a solution to the problem (didn't help very much going back on it tbh).
Gynae is saying that basically, there isn't a definitive solution - he says it's not endo because he didn't see any. Says its not adenomyosis because I don't have a boggy uterus. But says the best solution would be to try for baby and reminded me that I shouldn't really leave it too long.
He suggested I stay on the POP for now, he'll refer me to the pain clinic, who can sort out the pain with neurotransmitters (with potential side effects) & then see me in 12 weeks.
So here's the thing - I'm in pain with no real 'cause' or name to put to it.
If I come off the pill (& avoid the NTs) to try for baby, I'll likely be having more time off sick and won't be able to take any decent medication to help the pain... there is the risk I could lose my job for too many absences. I don't know whether to ask if I can drop to part time hours, to just do my hours when I'm fit and able, but then I'd probably only get a fraction of SMP (I don't know?) as I'm not "full time"...
BUT... there's no guarantee that being pregnant will stop the pain - it seems to be the gynaes best guess as he has no other answers to give..!
I just needed to vent and though you ladies would understand Xx
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JellyKat
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Hi, yes, that is something we are considering asking for... when I first saw this gynae it was when I'd called up the private clinic attached to the hospital, explained it might be endo or ovarian cysts - they said we'll call you back with an appointment for the right doctor, and got this chap.
He doesn't specialise in endo but others at the same clinic do - I didn't know then to insist on an endo specialist, it was only before the lap the registrar said that if they saw something simple, the gynae would do it, or if it was complex, leave it for the specialist... I was sat there thinking "I thought he WAS a specialist!?!".
Sorry you're going through all this! So annoying having pain and no answers as to the cause. That makes it all the more frustrating.
Is you job the kind of work you can do from home? Then at least you wouldn't be taking too much time off and could work it around your 'bad' (painful) days.
Is there anything else you could try, acupuncture to manage pain while trying to get pregnant?
Hope your work place can be a bit flexible and you find something to ease your pain.
Hi, thanks for the reply. Yes, work will let me do some from home (but it's not ideal - I've not been doing the physical part of my role [important] for some months now as it is), but on the bad days it really is a curl up in agony feeling. I've used some annual leave for a couple of bad days last year, I may just have to consider doing that again this year to keep the sick days down...
Hi, I have a 6cm cyst on my left tube.. It causes me pain all the time.. How small is yours? My gaeny told me if you go on pill for a month then off.. For some reason it's a good chance you fall preg if that was worth a try? All these gaeny appointments drag on and get stretched forever might be worth trying for a baby and hopefully pain reduces? Hope you get a solution and things pan out for ya
Thanks for the reply... we've decided that I'll stay on the progesterone only pill for three months, i.e. Until the next gynae appointment, to see if they help. In the mean time, if it does help, I'll hopefully be able to have a break from the pain, build my strength up [that much pain for that long is so exhausting!], get my body ready to start trying for a baby. I'm looking into natural ways to reduce estrogen in my body as my pain is worst when the estrogen levels are highest.
Did a gynae say your cyst was responsible for your pain? Mine is half the size of a small fingernail apparently...
Hi, I guess theres a big diff in size regarding our cysts. Mine is the cause of all my pain atm, My gaeny found it during an eternal and thought it was 4cm, until after my scans and found that there were a few on top of each other making it 6cm. My Lap keeps getting cancelled, so next week im booked in again to see if there is any endo as well as cyst removal and dye test.
Good grief - ive just re-read that - I misread it as 6mm but 6cm is huge!! Hope the removal goes well x
Hi, if i was you i would get checked by an endo specialist. I was on progestogen only pill for 11 months and it didnt help, my pain got increasingly worse on it. i then had a lap by a general gynae who on one hand said she doesnt think its endo but on the other hand said there were old sites of endo but she just left them there! As she thought they were inactive and werent the cause of my pain. i now have a coil fitted and still have the same pain and it is in fact getting worse. i am going to try and get seen by an endo specialist. Progestogen only pill and coils can help alot when endo has been treated but if it is still there they wont do much from what i understand and from my experience. i really hope you get things sorted. i have been treated for endo before back in 2009 and i was pain free for 4 years. i had a baby in 2012 and was fine all through my pregnancy. my problems and pain started again a year after i had had a baby, when my periods returned and became increasingly heavier and problematic. i would urge you to get a second opinion from a specialist, get the treatment you need then try for a baby. i wish you the very best of luck x
Thanks for the advice... what you said about getting it sorted before having a baby makes good sense, it's why I went back on the (combined) pill back in December (only recently swapped to POP) - my thoughts included 'even if the pain stops while pregnant, but comes back, I don't want to be in agony unable to look after a small baby properly' or 'will I have to choose between decent painkillers or breastfeeding' or even 'if it's not gynae related, what if I get pregnant and still have the pains?'.
i understand how you feel. i am still in pain and i dont know why and am being told its just hormones and mild hormonal ibs during my period - this was by a general gynae. my gp doesnt think hormones could cause the amount of pain i am in. i have been given some tablets that are for ibs to see if they help but they have made no difference from what i can tell and my bowel movements are fine anyway. i am going to push the gp to help me find out the cause of pain because in my eyes there has to be a reason for it and it shoudnt be ignored. so i think what im trying to say is do everything you can to find out cause of pain and hence what treatement you need before you try for a baby. you can then make sure you are fit and healthy when you try and that will help you conceive. good luck x
As my pain is mid cycle, I used ovulation tests or track which days I had elevated estrogen and LH levels, I plotted this on a graph against the amount of pain I was in & how many painkillers I needed. Sure enough, there's a correlation.
As I mentioned, I'm looking into other ways to reduce estrogen, as even too much candida in your gut can produce a chemical that mimics estrogen, for example.
If your pain is during your period, I'm not sure if OTC hormone tests will show you what you need to prove, but tracking the symptoms against your cycle may help if it shows the same patterns occurring?
Hi, yes im tracking my cycle and symptoms too. i have a pain and bowel movement diary, how pleasant lol. Yes there are certain foods you can eat to reduce eostrogen however you do really need to totally change your diet from what i understand for it to work. i did it back in 2009 before i was officially diagnosed with endo but it didnt work for me. Which pop are you on? Cerazette stops ovulation in 97% of people which would help. unfortunately i was one of the 3% of whom it didnt!
i bled on cerazette for a couple of months, pretty much every day but was spotting some days then i stopped bleeding. But i always had ovulation pain and pain at end of packet when i would have had a period. didnt bleed but had all the period pains etc.
Thanks for sharing, it's useful to know other people's experiences, especially as it seems like both myself & my gynae are pinning so much hope on it working to alleviate symptoms. He told me though if I bleed to just take two tablets on that day, so I'll see if that helps drown out the other hormones.
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