So confused - could be endo?
Firstly thanks to anyone who takes the time to read this It's my first post here and I'm hoping I can learn from different experiences to work out what's going on. I'd love to hear anyone's similar stories or if you've heard anything similar before.
I'm not really a drama queen (mostly ), but do sound quite analytical about it (having been told this) but I think it's mainly because since last February I've debated whether to try and work out what symptoms mean, and as much as I tried to think leave it to the dr's, I've gotten to the point where I'm not sure they know - or care to be honest - and what I do now so I'd really appreciate anyone's time or opinion or experiences because I'm at a dead end wondering what to do now.
So - coffee ready - starting right at the beginning, I turned 30 last year, been with my partner for years, married for about 3, and have no kids but been trying to years - not through any methods of temperature taking etc, just no contraception.
My first knowledge of having cysts on my ovaries was when one ruptured last February and I was rushed to A&E with pain, sickness etc. It was expected to be my appendix that had ruptured, but getting in there to remove it via a laparoscopy, they discovered it was an ovarian cyst which had ruptured and bled out. Because it was then only 1cm and sealed itself back up, they felt it would go by itself and left it.
I still had pains all around my backs, ovaries, legs in between the operation and April when I had some scans. The scans showed nothing up so the hospital signed me off with the problem (cyst) expected to be gone and at the time the pain seemed to be dying down, it wasn't daily as it had been and so I thought great and had no reason to question anything.
Mid-May time everything came back and the pain was consistent like it had been at it's worst, pains around my backs, kidney area, ovaries, down the front of my legs and every time I breathed the pain just caught me from my back which after a week or so pushed me to go back to my drs for advice.
At this point I'd point out I'm a total novice on the cycle stuff. I had no idea until told mid-May that you ovulate on/from different ovaries monthly.
The first dr I saw basically treated me like I was a hypochondriac and told me to go away and see what it did. Literally 5 mins before I went in, I told a friend this was what I expected so I virtually burst out into tears - never done anything like that before - and just left. I had a call from a nurse later and to be honest aside from being in pain and a little OTT mood wise (tears, mood swings - something my OH has had to put up with througout the whole thing to date) I was just annoyed and I think it came out in tears.
The nurse told me to go back in for an appointment with the only female dr, a locum, and she actually listened. She felt the area around the right ovary which had had the cyst on it and said it felt inflammed. She took a sample to check for an ectopic pregnancy and booked me for bloods to check for ovulation and referred me back to the hospital to go under a consultant to investigate further.
I couldn't have been more relieved and still feeling embarrassed about virtually running out of the room of the other dr, I felt relieved someone was actually trying to help.
I got taken back under the consultant at my hospital and had an appointment July time to discuss. The consultant told me a cyst could still be there, and have been missed, and he would be going through fertilty stuff too (but I'll leave that aside for just now) and said the best thing was to do a laparoscopy and remove the cyst while checking the fallopian tubes.
The operation in Feb was the first I've had and I hated the recovery period, I'm not sure anyone particularly enjoys it but it's a fear for me now but I thought if that's what has to be done, then fine.
In between then and getting the offer for an operation in September/October time, the pain totally went. I had about 3 weeks totally free and I'd changed my diet (juice diet for my sisters wedding) and lost about 1 1/2 stone, which I thought could be the reason and so I asked for an appointment to see if there was another way to check the tubes and go from there rather than take the appointment space up from someone who might need it and be in pain now.
At this point I don't know if that was stupid or not. I just wanted to be sure that what I did next actually gave a resolution rather than be a 'lets try and see' sort of thing and don't think that's unreasonable although I felt like I'd messed the consultant around, and perhaps he's not best pleased.
The appointment came through November time. In between the time I spoke and getting the date, the pain all returned (stomach pain, all across it like a heavy feeling, pain down the front of my thighs, around my lower back, sides, nausea without being sick, needing to go to the loo a lot sometimes, sleep problems etc) so I left the tubes stuff out of discussions. In fact I was never asked nor has fertility stuff been mentioned since the first appointment or letter confirming the reason for the operation by the consultant.
I explained the pains had come back. Around July time it was really every other month was bad pain wise. Now it's constant. One month is worse than the other, but there's no let up. And asked if there was the option to do some scans and see what's going on before we do anything else. He said that seemed reasonable and I got booked for some scans for early Dec,
At the time the Dr doing them told me a bit about her, where her family lived etc because I have an unusual surname so I remembered about her, her name etc. She told me what was what, that my left ovary has lots of follicles over it and my right ovary has 2 x 1.2cm cysts on it.
I felt relieved really to know something was there which could be causing the pain. Just so I know/knew I wasn't imagining it, like validation I suppose unless that sounds weird. Because it's been so constant you doubt yourself a bit. Or I do.
Anyway, we discussed a bit about fertility, medications and I said nothing had been discussed just really that the consultant would write to me with options after the results of the scans and that was that.
The letter I received said the cyst hadn't reappeared on the right ovary and all was well so I would be signed off.
This is probably where my lack of knowledge came into it but I thought hang on I was told there is something there and this is what I was told so that doesn't match up with nothing being on the right ovary.
He (consultant) wrote to me once he was back from holiday and explained that there was no cause for concern, the cysts are normal but it still didn't tally with why I was still in pain so I had a call with him and he ran through the Dr's scan feedback.
Basically it said my womb is a bit of an abnormal shape (born with it like this) my ovaries are fine and my womb and muscle lining is fine so no cause for concern.
Plus, because of the long process so far, albeit some of that my fault but I'm trying to think that if I'd had the operation in Sept time then it could have shown nothing new if these right ovary cysts are new because the pain went and came back.
I re-iterated what could the pain be then because I'm still in discomfort, pain down the front of my thighs, heavy stomach and sometimes to the point I can't walk, down/around my sides and lower back, feeling sick without being sick, and to be honest it's really disrupting everything. I'm either in pain or and not wanting to use painkillers (I'm a real light weight and even just a couple means the next day I'm tired) or I take some just to get it to die down and have the after effects aswell. I feel like I'm waiting for something to happen next, a rupture, the next really really bad day and don't have a resolution or end in sight.
At the end of the call the consultant said the scans showed nothing so it was either go back to my gp or he could do a laparoscopy to look into endometriosis but either I'm being paranoid and he's just offering this to shut me up or he genuinely thinks it. Its the fact he signed me off with the knowledge I was still in discomfort that bothers me and makes me doubt to be honest.
I went back to my new female locum GP and she was confused. She said he's the expert, I can only refer you back to him or someone else there if he's actually signed you off but she said a laparoscopy could show more than the scans did. She's left it to me to decide to go back to him or another consultant there because she's not a specialist, whereas he/they are.
She wants to be kept in the loop by me as to how it's going and how I'm feeling but I'm just confused and teary and moody and in pain and putting weight back on (around a stone from what I'd lost), even though my diet's pretty steady (not great to be honest), I do regular cardio (football, cross trainer, treadmill, swimming sometimes maybe 3-4 times a week).
Towards the end of 2011 I noticed my periods were getting heavier and more painful but those symptoms seems to have been inconsistent last year. And I'm pretty regular, 24-29 days p/cycle.
To anyone who got through that, thank you for taking the time. I know it's a whopper and I'm open to any advice anyone has. Any personal stories, just anything at all to try and help me work out what to do next or what could show up from a laparoscopy that maybe didn't show up on other peoples scans. I just don't know what to do next.
Indecision - that's another problem of mine
Thanks so much again. I really do appreciate this is a huge, huge post.
Edit: A question about endometriosis because I'm a total novice as the above probably shows - is it a fairly constant thing, or could the pain differ month to month, and are there any particular times in the cycle where it's worse?