Frustrated..and not yet diagnosed!

[Terri79]

Hi, I have had my 3rd appointment today with the gynae Dr's for pelvic pain (? endometriosis) which I have had for over a year now. My previous appointment left me with 2 choices, 1- to have coil fitted to see if that helps or, 2- to have a diagnostic laparoscopy with coil fitted at same time.

I initially chose the coil option but after speaking to my lovely GP (who fits coils), she advised having both lap and coil at the same time. I went back to discuss this today and felt really upset when I left. the Dr (SHO) seemed a little off and I didn't feel she took me serious, pretty much like them all ( I have seen a different Dr each time), however after speaking to the registrar she did say it wasn't unreasonable to proceed this way.

I just feel very confused and frustrated with it all, and more so fed up with my pains.

I don't want an operation, but if it will diagnose/rule out and helps my pains I am happy to have it. The Dr has listed me for the laparoscopy, but as they made me feel rubbish about the whole thing, i'm even more confused.

has anyone been given these options, and what did you do about it?

Thanks in advance x

[Mummycox33]

Hi. I'm sorry to hear u r in pain

I just read your post and it sounds exactly like me

I started having unbearable pains nearly 2 years ago. I was at first told the usual it's just period pains ect

I saw the gyne first in jan this year and she said she doubts it endo as I have 4 children and I'm 33!! She told me to get mirena coil and go back in 6 months if still in pain. I have had mirena for 5 months and I have almost stopped bleeding but the pain seems to be getting worse. She said I can have op to check but she didn't seem too interested and didn't seem to want to help. I have my next appointment next Tuesday and I'm going to ask for op. I'm really worried about having op but just want to know what is wrong with me.

I think drs need to check more and have more care for us. Sometimes they don't seem to care and just fob us off

I think we need to just keep on until we find a good gyne that will listen

I wish u luck and all the best

Xxx

[Terri79 in reply to Mummycox33]

Thanks for your reply. I wish I had made my decision few weeks back when I seen the last Dr as she seemed to listen. I felt I was wasting there time today but think that was because the clinic was running over an hour late, hence not being listened to properly.

I am the same, I don't want an op but want to know what's wrong. My mum had endo and had 4 kids.

The registrar is running it by the consultant and if she's happy then I go ahead if not I will probably have to try the coil first.

It's not fair that they don't listen, good luck for tues. x

[Miracle77]

The coil can be a hit or a miss. It can also be painful to insert. I am an anaesthetic risk so gyn offered me mirena to see if it helped enough to avoid op. It has helped a bit but not enough so I'm now listed for lap. My advice is have the lap with coil put in at same time as then any endo will be treated and u will know what u are dealing with. I changed docs as wasn't happy with my gyn and the one I have now is much better and he said the mirena on its own will not helped untreated endo and I would agree since it's not helped me enough to avoid op. Good luck with your decision.

[Terri79 in reply to Miracle77]

Thanks, this makes me feel better. The Dr I seen few weeks back was lovely and i wish I had decided then to go ahead as wouldn't of came away feeling low today. I currently have the implant as had to come off the pill due to migraines, and pains started about year after coming off the pill. apparently the implant is another way to treat endo but if that what is what I have then I can't see it making any difference. I think I want to know what's what.

[Catlover93]

Hi lovely,

Really sorry to hear your having a crap time!

I have had similar experiences as you, my battle to get diagnosed went on for nearly 3 years which is quite short considering some of the stories I have read on here (some took 25 years to get diagnosed). It's a very long, and gruelling process to go through, but I always felt reassured to know I had very supportive friends and family, and that I wasn't alone. Whenever I feel down I usually come on here to read posts to see if I'm not just loosing the plot, or that it's all in my head (as some doctors make you feel). It's a relief to know that we got each other for support and help at all times.

I recently got diagnosed (last friday) with endometriosis, and had it treated at the same time, and my biggest message to anyone who is feeling depressed or undecisive is DO NOT GIVE UP !! Prepare yourself for a long battle hun.

My options were very much the same, and I chose to have the laparoscopy with mirena fitted at the same time, because I needed the diagnosis to be able to move on with my life - but that's me, everyone's different.

I was happy to have the lap asap so I could get treated as I couldn't stick not knowing what was wrong with me any longer. Especially me cos I always think of the worst lol!

It's a decision you have to make yourself, my advice to you is that I wouldn't want you to refuse the lap then regret it and wish you had done it and there was a chance you might have been diagnosed. Just remember, having the lap and the coil fitted at the same time is killing two birds with one stone - that's how I looked it anyway. If you don't mind me asking hun, what are your reasons for not wanting the lap? I know no one wants to have surgery, but if there is a chance you could finally get some answers, wouldn't you rather get it over and done with?

Whatever you choose anyway is your choice, and I wish you the very best of luck!

Keep us updated,

sending you lots of hugs

xxx

[Terri79 in reply to Catlover93]

Hi,

Thanks for replying. The reasons I don't want an op is because of the risks, but I am thinking the same as you. if I have one and found out what is causing the pain then I can get on with things. I think my doubt today is down to how the Dr was with me. Plus if there is nothing to find then I will have wasted time.

I have signed consent for the lap and coil. so will see what happens next.

I appreciate it's not the easiest thing to diagnose. just fed up with it....but hey like you I think the worst to.

hope you feel better soon. x