So confused - could be endo?

Hi there,

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.

Kim

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?

Thanks again :)

15 Replies

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  • Hi Kim.I will keep my message short as I am sure you will get lots of advice here.It sounds very much like you have endometriosis and I encourage you to have a laparoscopy so you will know for sure and get the help you need.Although cysts will show up on a scan,endo won't so a lap is the only way for you to know for sure.good luck.

  • Hi Cazzer8282,

    Thanks for taking the time to read through all of that and reply.

    That's exactly the sort of thing I've been hoping to find out, really just some advice and experience and I'd no idea what could show up which didn't show up on scans.

    I've suppose just lost a bit of trust with the consultant, maybe un-necessarily on his behalf, and don't feel like I can ask questions without feeling like I'm being looked on as a time waster.

    Thanks again.

  • Hey Kim,

    I know exactly how your feeling both with the symptoms and the emotional side of things and also confusion an frustration with gp's and other specialist doctors. I personally have been very disappointed with the lack of information I have recieved from doctors and what seems like a lack of concern on their part.

    I have been very ill with severe symptoms for two yeaars now and have just had a laproscopy and been diagnosed with endomitriosis however it has beed a long journey. For a long time my symptoms were put down to ibs and the doctors seemed to think i was exagerating or making too much fuss over symptoms but I was tried on different medications and told to stop eating certain food however this did not make me any better and in fact I seemed to be getting progressively worse.

    I had two scans on my overies which both showed cysts which then dissapeared after a while. I was told by the lady doing my scans that these were not usual but complex cysts which to be honest I don't really understand what this means but then the doctor I was seeing said that they were just a normal part of my cycle this obviously didn't match up!

    I then found out that I had a family history of endomitriosis so insisted I see a specialist and after a few months of monitoring symptoms and trying more tablets they decided to do the laproscopy and I was finally given my answer.

    My advise to you would be to go ahead with the laproscopy as hopefully it can give you an answer and help you to move forward with treatment etc. I had my procedure on thursday and though I still feel a bit groggy which is to be expected I am recovering well.

    hope this helps at least a little x

  • Hi nainai21,

    Thanks for taking the time to read and reply - I'm glad to hear you're recovering well since your lap on Thursday. Its a lot to cope with for 2 years and I definitely wouldn't class myself in the same camp as someone who's had it the worse it can be.

    My OH has Crohns so I always think regardless I'm lucky compared to him not that he'd ever say anything - and when it's really not good, thank goodness he has painkillers I can half that are a bit stronger than paracetamol :)

    I'm at the point I think the laparoscopy is the only way forward I just have to decide I guess whether I stick with the same consultant if I'm not yet signed off, ask to move to another via another GP referral or just get on with it with whoever :) I just felt like I don't know, I'm at a bit of a cross roads and any advice is welcomed from people who have experienced this sort of thing, in terms of pain around the same sort of area.

    Thanks again.

  • I've replied fully below but just wanted to say - please try to find an endo specialist to be referred to. It does make a difference who's doing the lap as endo can be hard to visualise and the surgeon has to know what to look for. For example, the specialist I used to see gave me a DVD of my lap and I suddenly understood why my first emergency lap was "clear" - when I first looked at the DVD I couldn't see anything but once he started removing it I could see that it was everywhere. Most of the photos you see of endo is of red or black spots - mine was orange and clear, like blisters, and many gynaes would have looked at it and not seen anything.

    So it can make a difference who is performing the lap as to whether you get your diagnosis and whether they find all the endo. If you can get to see a specialist, you should. I initially paid to see a specialise a few hours away privately and then he put me on his NHS list so that may be an option to speed things up.

    You should also see the gp and ask for some proper pain relief of your own - you probably want to start with something like codeine and voltarol.

    x

  • Thanks Cupcakegirl, I looked yesterday to try and find a local specialist and it seems my consultant has a specialist interest in endo, reading a profile on a private practice site. I can see some specialists in Nottingham though so I may follow your example and go down that route.

    x

  • Hi Kim

    I made it through your essay! Lol!

    From my limited knowledge a scan, wether internal or external, will not show endo, only a lap will. You said you had one of these a few years ago when they first discovered your cyst, do you know if they looked for endo? I have no idea if they would need to look for it or if it's so obvious they would see it.

    Personally I would go for the lap and at least it either give you an answer (endo) or rule it out.

    Don't worry about wasting anyone's time, you need answers, be selfish!!

    Good luck!

    Tanners Xx

  • Just to add, it's very possible that they wouldn't have seen endo in the previous op - they were looking at the appendix and the ovaries and weren't looking for endo. In an emergency op like this, they are purely there to deal with the emergent problem as quickly as possible. Unless the endo is severe and visible on the surface of the uterus/around the ovaries, they're unlikely to see it - a lot of endo occurs underneath the womb in areas like the pouch of Douglas and they have to literally move the womb out of the way to see that area. They also need to use additional instruments to move organs out of the way to find the endo. So its very possible that in a quick emergency op they wouldn't have spotted endo as they weren't looking for it and it can be hard to visualise.

    Hope that makes sense :)

  • Hi cupcakegirl,

    I've just seen your two extra posts and thanks for taking the time to answer the extra q's I had.

    I feel a total novice, perhaps because I am, and I can't tell you how much your replies with additional info and advice, aswell as the other ladies, has helped in just helping to better me understand what's what really.

    Thanks again.

    Kim

  • Thanks Tanners, glad you made it through - in between my call from the consultant to discuss the results I spoke with my GP and she told me to make bullet points, I couldn't quite believe how long that was either :)

    I don't think they did look for endo on the first scan, I think in the laparoscopy they looked purely to take out the appendix and then saw the cyst and left it. No one mentioned anything re endo, so it could be there wasn't any or the didn't look, I'm not sure really.

    In the scan which followed, I think they only looked for the cyst or that was all that was mentioned. In the most recent internal scans, they checked the womb, womb lining and ovaries, and said all was fine, mentioned what was there follicle/cyst wise. I've heard endo can affect the womb lining which is why I wasn't 100% sure if my consultant was just trying to quieten me with the mention of the laparoscopy to look into it but because he said we could look into endo, I'm guessing that means it's not been on the radar before? But that's a guess.

    And a long winded guess judging by my reply - sorry :)

  • Sorry to keep replying to your separate posts.

    Endo doesn't usually affect the womb lining - maybe you're thinking of the definition of endo, which is small bits of womb lining growing outside of the womb. These then grow and bleed when you have a period, and the blood can't escape so it spreads the endo and causes adhesions. This is a very quick overview but that's essentially it.

    You might also be thinking of adenomyosis, where the endo grows inside the muscle wall of the uterus. This is very hard to diagnose and treat but the womb can appear bulky in a scan or a lap and this can suggest adenomyosis.

    x

  • Hi Kim absolutely go for lap. As the ladies have said its the only way to find out if you have endo.. . They will have a good look around for you and hopefully make you feel a whole lot better. Thankyou for sharing your story we can all take something from it and relate to it. Good luck and hope you get some answers soon. Dont suffer longer than you have too its not just physical its mentally exhausting too. Keep strong x J x :)

  • Hi jalo69,

    Thanks for the reply and advice. I've had a weird day feeling shaky, hot, ridiculously tired and pains feeling like they could kick up a gear all day, it really is draining all round isn't it - whatever it is.

    It gives you an appreciation reading through ladies stories when they've had for years and years. I don't know what's going on with me, but knowing some people have had problems ongoing for years...

    Thanks again - Kim

  • Hi there

    I started suffering with endometriosis symptoms 18 years ago, aged 12, and was diagnosed almost 10 years ago via laparoscopy. In that time, I've done a lot of research and seen a lot of doctors, some great and some very bad!

    Endo is a very individual disease, in that everyone suffers differently. Some people, like me, have mild endo but severe pain on a daily basis. Some people have very severe endo and no symptoms at all. Then there's the huge spectrum of everything in between.

    You certainly have a lot of the symptoms typical of endo. Many women have pain that varies throughout their cycle as the endo is stimulates by hormones and then bleeds. It's also possible that you have adhesions as a result of your first surgery, and if you have endo this also causes adhesions (internal scar tissue that can stick organs etc together). If these are pulling ovaries around etc it can show up on scans, and cysts will show up, but otherwise ultrasounds will usually be clear even if you have severe endo.

    I suspect that the burst cyst you had may have been an endometrioma (this is like endometriosis but an ovarian cyst which fill with blood and some women with endo get them). They say the cyst bled - I'm fairly sure that most cysts are filled with fluid and not blood unless it's an endometrioma, but I may be wrong about this as cysts aren't something I've researched much. If that's the case, they should have referred you for a lap straight away, since endometriomas are part of endo in general. Was the word endometrioma ever used as far as you know?

    I think you should definitely have a lap - personally I would try to find out if there are any endo specialists in your area and if so, ask for a referral to them. I'd also suggest doing as much research as you can into the disease and the various treatments, side effects etc and think about how you would want to proceed. If you want fertility investigations, which I think you should have after trying for so long, you should make this clear to the gynae at the start.

    I know this is all scary and not something you want to go through, but a laparoscopy where they remove the endo could make a huge difference to your pain if that's the cause. Unfortunately many gps and even gynaes are not fully clued up about endo and so we have to arm ourself with knowledge and often fight for the treatment we need.

    Good luck

    x

  • Hi cupcakegirl,

    Thanks so much for your reply. I can see you've done a lot of research yourself, and can totally understand why, so a big thanks for your feedback and passing your info on.

    No, no one until the end of the line with the cyst investigation after the two scans, trans-v and trans-a, has mentioned endometriosis before, which seems disappointing if it's been a real possibility. It surely would have been worth mentioning that it was something to look into.

    I will definitely ask if there's a specialist locally. I'm not 100% confident in my consultant so far so it may be there's someone else in his department who does know more.

    Given what you've said, re cysts and blood and what you've learnt about endometrioma, and what the other ladies have said, I'm feeling more confident about the laparoscopy and that it won't be something that leads nowhere, which was my worry. It has to be done to try and find out more so I'll bite the bullet and find out what's actually going on so it can hopefully be helped.

    Thanks again, you've been a big help.

    x

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