Nerves....question?

[Duracell8D]

Hey, so can I just ask did anyone else have nerves about the surgery and what if they don’t find anything? I’ve had two doctors and a nurse with Endo herself tell me that’s what they think it is, yet still I know that a piece of paper saying yes you have it will put my what ifs/mind at ease. I’ve got no reason to doubt myself and neither do the doctors and all the symptoms fit. Sorry for the ramble but did anyone else feel like this? X

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I'm having a lap in 4 weeks and I'm terrified that they won't find anything, I mean I don't WANT to have endo but I'd much rather know it was than them find nothing and then have to start back at square 1 seven years later to find out what it is! Fingers crossed for you x

[Duracell8D in reply to Hidden]

Thank you, you too. I’m seeing a senior consultant with Endo experience at the end of the month so we will see what happens. Let me know how your lap goes, pleases for you that atleast you should have answers soon xx

[Abigail16]

Hi, I had a laparoscopy on Tuesday for the same reason, I wanted to get to the bottom of my pain even though all the doctors and radiographer said they thought I had it.

I needed to know for sure so I could deal with it and take steps to make me better. If you have endo they can usually remove it (if not too severe) at the diagnostic lap so your symptoms could immediately get better.

When they did the lap they didn’t find anything and now I need to try and find what else could be causing the pain as it is so severe. Obviously surgery is a big decision but it is the only way to find out if that is what you have and I think it’s important to know so you know what you have to plan for and potentially deal with in the future as if left untreated it can get worse

Hope this helps. If you have any more questions please feel free to message me xx

[Duracell8D in reply to Abigail16]

Thank you, I’m sorry to hear that things didn’t show up easily for you. Can I ask how long it was for you to get from Consultant to lap? Do they have any ideas as to what yours might be? Likewise, if I can help xx

[Abigail16 in reply to Duracell8D]

I was actually really lucky in that my first consultation was on the 8th August and my lap was scheduled (the first time) for the 9th October - it was changed because I had to be off the contraceptive pill for 4 weeks+ before my laparoscopy so it was put back to the 23rd then again put back to the 24th so if there wasn’t so many changes it would have been really quick!

It did actually speed up the process because I had tried a lot of different pills before finding one I sort of settled on, I also had tried the depo injection which is also something they suggest for endo. They offered me the temporary menopause but I said no as I wanted to have a diagnosis before I put my body through that (I’m now glad I chose that)

I saw my GP last week and it was too soon after the op so they hadn’t actually seen the notes so they wouldn’t comment on what steps we need to take next. The doctor actually said to me “sometimes it’s just one of those things and we never actually find the reason for the pain it’s just good that we can rule out anything we would be concerned about” but im not taking that as an answer and I’m going back once they have the notes from the op. The doctors at first were saying it was IBS but I knew it wasn’t as it was only my period that had changed at the very beginning. Having said that I did have to trial 2-3 different IBS tablets for 3+ weeks before they listened to me in that it wasn’t IBS

One last thing, how old are you? I’m 22 and they at first didn’t want me to have the operation at such a young age but when my symptoms got worse so quickly my gynaecologist said that was my only option

[Duracell8D in reply to Abigail16]

Hey, thank you so much for your response. I’m 26, 27 in a few weeks. I’m sorry it took me a while to reply been knocked for six with a cold/flu. I have ME as well you see :-). That’s good to know re your timings, I see the consultant on the 29th so I was hoping for a cancellation and they could see me before Christmas but I’m beginning to think that’s unlikely but you never know. If they didn’t find any Endo do they have any idea as to what yours is? X

[JackieBo in reply to Duracell8D]

Not to be a Debbie Downer, but I first saw a consultant in February of this year and I am now about 4-6 weeks away from my first lap. They still haven't given me a date, just told me it will be in early December most likely so, yeah, I've known something was really wrong since February and, hopefully, I will have my lap within 11 months of that.... 😐

I share your fears completely. I'm torn between what if they find nothing and what if it is as bad as we think it may be? Either option sucks in its own special way.

Best of luck to you!!

[Duracell8D in reply to JackieBo]

Hey JackieBo, thanks for the response. I know I’m being unrealistic but trying to be hopeful. Your not being a downer you are being realistic. I think at this stage because they have ruled out pretty much everything else I would just like the Endo diagnosis so I can move on. Does that sound mad? 🤔😜

[JackieBo in reply to Duracell8D]

Not at all! I've been chomping at the bit to get to the lap for most of the year, but they have taken their sweet time, moving me from one med to another to see if anything helps (it hasn't), so between that and the general wait times for the NHS, I'm only now getting close to my lap date.

I honestly don't know what I'm more afraid of: them finding nothing or them finding extensive Endo... 😐

[Duracell8D in reply to JackieBo]

I completely understand that. If I may, can I ask how long you waited for your Gynae appointment?

[JackieBo in reply to Duracell8D]

When I first went in in February, my gp told me I had probably had a cyst rupture and suggested I may need to see a gyno if symptoms continued. Then, by Paddy's Day, things got way worse and we went to the A&E. the male doctor there told me I just had a UTI, which I bluntly told him was incorrect - we all know what a UTI feels like and that ain't it! A nurse in the A&E argued my case so he finally called the gyno wing of the hospital and told them my symptoms - they had me in at 9 am the following morning.

That was in mid March though... I have been back two more times and it was only on the third time that they decided that I qualified for a lap as they spent the rest of the year trying different meds to see if that alleviated my symptoms - they didn't.

By September 6th, they finally agreed I should have a lap and since then, I have just been waiting. They said my lap should be in early December, possibly sooner if they have a cancellation.

[Duracell8D in reply to JackieBo]

Bless you, thank you for answering my question so honestly. I am hoping you to get it sooner. Sorry for the late reply having some issues at the moment x

[Abigail16 in reply to Duracell8D]

Hey really sorry! I wrote a reply but it looks like it hasn’t sent. I’m having trouble with my app

That’s not good I hope you’re feeling better soon! Yeah I was lucky but like I said I had already been through many contraceptive options, that are generally used for controlling endo so it depends they might want to try you on those before an op if you haven’t had them already. I had also been signed off work since the middle of August so I think that’s something that they took into consideration and tried to get mine done sooner

Unfortunately i was seen by a general gynaecologist and now I’m in the process of being referred to a BSGE centre where they are specialists in endo. This is because I have since found out and my GP has confirmed it, that if a general gynaecologist does the op they can very easily miss endo

I would also advise to see an endo specialist if possible do you don’t have as much possibility of it being missed by a general gynaecologist. That’s something I didn’t know could happen until it was too late! Good luck with everything and I hope you get your operation quickly!x

[Duracell8D in reply to Abigail16]

Thanks Abigail16. You too, let me know how it goes? I’m having issues at the moment so don’t worry about the reply 😊. My consultant isn’t a specialist but he is a consultant who has a special interest and 8-10 years roughly of Endo experience (private and NHS). I know that there is no one in my area who is BSGE accredited and without a firm diagnosis I didn’t feel I could push to be seen at a BSGE centre. Yeah it can easily be missed but I’ve heard lots of great things about other patients and colleagues of his, some who have Endo so I’m praying it will all be fine. Thank you for the advice though X

[Abigail16 in reply to Duracell8D]

Oh well that sounds promising so I’m sure you will be fine seeing him! Good luck x