Advice needed! in pain everyday, still waiting

[eviesweetie]

over 4 years ago when i was 21 / 22 jut before my birthday, a 8 cm complex cyst was found on my left ovary. I had pain everyday, swelling and very ill most of time. My tummy was swollen soo much everyone noticed. i was taking in to hospital in newcastle within 2 weeks of finding it. had my left ovary, tube removed and found i had my womb covered in endometriosis.
4 years on i am now 25 years old, just graduated from university and again found a 4 cm complex cyst on my last right ovary. They think i have endrometriosis on my bowels and have alot of tummy problems. In pain now! waiting, waiting! i got sent to one specialist within 4 weeks of finding it, who has sent me to a fertility expert who will need to do the surgery as i only have one ovary left, no children yet and only 25. waited 2 months now for a date.. nhs has left me down, doctors on holiday(reasonable) nurse shortage ect... was to have my appointment today to get date for surgery. What did they do! rang me a day before to cancle my appointment! staff shortages again! moving a department and cant tell me when it will be resolved! what is going on!? to top it off, had a abnormal cell screening result also.
The give me loads of pain killers, but feel like they dont really care that it is getting bigger in size and destroying my chance at saving anything. I hope every day, something can be done asap!

[chaseyrobrunoca]

At least you know how much everything seems to cost. I live in New york, USA. Probably one of the most expensive places to live. I can't even tell you prices on anything cause i never see the bill only when my insurance doesn't pay for it and a year later do i see a bill and then i don't remember going to the doctor at all. Sadly, I'm so sorry to hear that she made you upset like that. Sometimes i think they don't like their jobs and they want to be anywhere but where they are now and we're in there way cause we're the ones preventing them from having fun. But i try to ignore the unhappy person cause she's not the one i pay to see it's the very cute obgyn that i come to talk to not you. Anyway she's been very nice to me since i complain to the dr about her telling me to find a new gyn. In my case he doesn't want me to leave and i really don't want to leave so it's also too hard to find a ob/gyn that i actually trust. I hope your able to make your appointment soon. Best of luck and feel better soon.
chasey  

[eviesweetie]

hi there, i know its soo annoying isnt it, they give you the run around...
i am just really disapointed in the u.k nhs, as we usually get good service here.. not this time tho... the only way i can get in touch with some1 is to ring, but there always off... looked in to getting private medical surgery, it costs £150 for appointment, £3500 for removal of cyst and that dosent include ferilty problems i need looked in too... who has money like that laying around... i dont ...
to them it isnt important, it isn their body ... we have a womens health centre, bu no luck there for me, she was unhelpfull, and made me cry on phone call...
shame...
hope your feeling o.k, keep in touch
evie xx

[chaseyrobrunoca]

I'm sorry to hear about your luck with your doctors, I can relate alot. I find that with my Gyn and his staff that i have to go to his office in person and talk to him. Only then do i see any action on his part. Recently (june) i Had gone To Er and couldn't get in touch with him, had to speak to a supervisor in the office to get an appoinment  5 days later. Only to be told by him to come back in August, then to be told to come back in september. So now i'm waiting til sept to have a US done and one week later if he doesn't cancel on me were go over the results. Meanwhile, I have to see my GP for something else so once again i go to ER and tuesday i just email him and let him know that i have a lower right cyst that raptured but is still attached to my ovary by a thread and that they want me to con't taking ibu 800 and tylenol for pain that never seems to go away. And i also mention that i have to follow up in 5-10 days with someone. So rather then go thru the aggrevation of trying to make an appointment with him. I rather discuss it with my GP. All of a sudden he wants to see me in his office as soon as possible. I Think oh god what now. I didn't tell you my update to get you to see me. you know, It gets me perturbed that when i need him hes not available but when i don't need him hes bent out of shape.  

[eviesweetie]

thank you, it helps that other people understand that this is stressfull and i do not need to be messed around, it worries me daily, as i get attacks every day with pain down my lower back, legs and across my tummy..
really considering making a complaint. i have had enough... i will ring again on monday for them to explai whats going on..
i am going away to see my family for a bit of a break and to try take my mind off it a little bit before i go crazy.
no point just sitting around waiting, i cant start working due to swelling and pain, with the strong pain killers it makes me feel sickly and some times dizzy..
thanks guys for listerning to me, i really helps me...
xx

[hopeshell]

I am so sorry to hear how you are getting the run around.   I hope you get your appointments soon.  Keep calling them if you don't hear back soon.  Hang in there!

Shelly

[ska4life1986]

hi i really feel for you ,you are really getting the run around but all you can do is keep ringing dont give up i really hope you will get this sorted out soon and you will be able to move on you dont need the stress when your not feeling well stay strong you need support ,it also helps to type it out and vent we are all here for you .

[eviesweetie]

well to update this...
just rang , finally got through to department after been given wrong number... the fertility expert i am awaiting receptionist is away untill 13th aug.. she hasnt rang me or anything. i got another number and spoke to a women who was very rude, checked her system and i and i dont have any appointment yet! to top it off, i had had to cancle my appointment for my other pap test with a different doctor, due to being on my period and needed a new one, receptionist was away and i left message last week, think its the women who i have just spoken too.. i told her no one has got back to me. about another appointment.. she said that i hadnt turned up, i was sooooo angry.. i corrected her, saying i cancelled it due to bleeding.. what is going on with these people..
sitting here feeling angry, helpless and upset... not the best way to be dealing with this...
they dont help!!!

[eviesweetie]

i know i have a complex cyst, and they think its a endrometrioma... thats whats on my ultrasound tests. liquid and mass,
chocolate cyst... it was last time, but due to rapid growth, pain, swelling, feeling unwell and high ca125 test, i had a large surgery to remove... i lost the ovary and tube too.
that was 8cm.. think that grew to that size in 9 months. so you can see my concern this time.. 3 months ago it was 4cm complex... not sure on what size a complex cyst can be drained... if it has grew bigger now, will i have to have surgery??

[eviesweetie]

thank you for your posts, really helpfull in hearing that i am not going crazy thinking this is al wrong.
went to my GP as i wasnt happy with this, they have sent a direct letter to fertilty specialist with my concerns, and to tell them i need to be seen asap!
my tummy is alot more swollen now,it reminds me of how i looked 4 years ago.
i had a pap test, this showed abnormal cells, awaiting an appointment as i have had break through and need to have them investigated.
the doctor wont give me a ca125 test, ?? something about it could be something els showing up like my endro, think she knows that i am aware of what it is and if its a high reading i might freak out.. but i think i have the right to know! my body. i hav been through it before.
i asked for some advice from another garni, but they werent helpfull, i wanted to complain to nhs hospital where they have let me down... he was like.. dont it might delay for date to see specialist .. i dont think thats right! they are taking away my rights to complain.
i moved this year to live closer to my partner, and where i had been treated before (north west) i recieved great treatment, fast and had my mothers help.
with they way things are, i am thinking of getting away for a week or 2 while i am still awaiting another date.. going to ring them today.. tried last week to ring hospital to get through to department but it was all automated, cut me off, wrong department... really bad system..
i might get advice from my familys GP who i seen last time, if they say we can get you seen quicker then i may have to be there to recieve better treatment.
i have been sooo worried, about the time they are leaving it, i wrote down all dates, its been 3 months since i went to doctors, took under 1 month after doctors to recieve ultrasound, then 2 weeks after that to see 1st specialist, then from 10th june untill now, 10th aug still nowhere???
thank you all for support and listerning...
evie x

[ska4life1986]

hi ,i am 24yrs and also lost my right ovary and tube due to a dermoid i also am single with no kids ,i think its a disgrace with the way you are been messed around can you get anyone to fight your case like your own gp or a politicen the health system is a joke i dont blame you for been angry ,i really hope that you will get the medical attention you need please keep posted you need support and you will get it on this forum from very geniune ladies take care x