Any advice?

[Confused_con]

Hi guys,

So I saw a private specialist on Saturday and she wants me to have a laparoscopy to see if I have endometriosis. As my scans have come back clear she doesn’t think it’s severe.

What was everyone’s recovery time? How long before you had sex again? And started exercising?

I’m having breakthrough bleeding at the moment and I’m in agony, plus my back is killing me today, the painkillers just aren’t helping today

I really felt like this specialist listened to what I was saying and I wasn’t going insane!

Thanks, Lou xx

[princessk09]

Hey, how good are private specialists! I saw one last year and he was amazing and really listened to my problems.

I recovered in about 1 week, went gym after about 5 days just for some light walking, nothing too intense. I was fatigue for about a month after surgery though.

I was single at the time so I didn’t have sex for several months after surgery haha so I can’t really help on that question.

Everyone recovers different so just listen to your body and don’t push yourself as it can delay recovery xxx

[Confused_con in reply to princessk09]

She made me feel so relaxed, listened to everything I have been going through and I felt like she believed me and like I wasn't insane like my GP!

I need to get a referral to the specialist for an urgent laparoscopy so fingers crossed it'll be soon! Bit nervous but its for the greater good and I can finally be out of pain and start living my life again.

Thank you for your response lovely xxx

[luthien]

Yay, good that you're going to have the lap to see what's going on.

It says on the discharge notes for laps to wait two weeks for healing etc. I was so impatient I only managed a week!

[Confused_con in reply to luthien]

I've been in pain now since October, I was in hospital for 3 days in December and all my CT scans and ultrasounds have come back clear, I genuinely felt like I had made this up in my head!

I am so relieved to be having the lap finally, I've just rang my GP for the referral letter, so fingers crossed in a few months I'll be having the procedure.

How long did you wait for your appointment out of curiosity? xxx

[luthien in reply to Confused_con]

Scans don't often show active endo so it's not always definitive. The lap if done by an endo specialist will pick up any endo, where it is and how severe it is. Do you know if you have an endo specialist? And do you know if they'll excise endo at the same time? For more info check out the BSGE website, plus the Endometriosis UK page. Lots of info

An endo specialist will be able to look for endo and know what to look for, a general gynae may not spot it simply because they're not always experience. Exision can be done at the same time as your diagnostic lap, it means less waiting for another lap, plus excision is known to be the best at removing endo and reducing regrowth - it removes all the endo and a bit of healthy tissue 0- usually only an endo speicialist does this. The other types are laser (diathermy) and ablation (sanding) these remove only the top layers of endo leaving the deeper layers to regrow - it's usually done by a general gynae as it's quicker and easier. It's a good idea to ask; and check out your specialst / surgeon.

I went privately as I have medical insurance through work. So it didn't take long, a few weeks - my specialist did my lap which was great! I think though through the NHS can take months - and it may be a different specialist doing the surgery. Hoping yours will be a short wait xx

[Confused_con in reply to luthien]

Wow that's so helpful, thank you! So the doctor I saw n Saturday was a gyno specialist but she said if they found endo cells during my lap that they'd be burnt off or cut away, so she seemed to know what she was talking about? She did mention that due to not knowing 100% if it was endo it could be to do with my fibroids or polyps, but this is why she wanted the lap to see what was going on, when she examined me she said the right side of my womb was very tender. I'm thinking yeah I've been in pain for 6 months and your fingers are somewhere uncomfortable right now haha!

In all serious I'd like her to perform my lap too, as I felt so relaxed with her and I do trust her.

I wish I could go private but sadly it'll have to be through the NHS so I am hoping my wait won't be too long xxx

[luthien in reply to Confused_con]

Sounds like you're doing the right things.

You could ask her secretary / center or look up online what her specialisms are, usually all doctors even NHS are on the web somewhere. It should list her skills. Make sure when your operation date comes through that you confirm you would like a diagnostic lap with excision, be clear to specify, then when you sign on the day of your lap check what they are doing. Quite often we say "whatever, just sort me out" which means they can do what they see necessary, so make sure you check the small print so to speak. Don't be afraid to make notes, look up the complicated medical terms - we can help you with that! Just remember it's your body so you need to know what they're planning - excision is cutting out, that's what you want. Have a look online on different removal methods for endometriosis, so you're clued up before your op; it'll take your mind off the wait! We can answer any queries you have on here.

Privately is so much easier, more thorough and less waiting, but it either requires finances yourself (there are payment plans) or medical insurance through yours or your partners workplaces, so I get it's not easy. I think I was lucky that my endo really got bad during my current work, any other time I wouldn't be able to afford it. I'm saving up now though for the future.

Oh on an additional note you could ask if there's anything else during your lap they could do - like a hysteroscopy - camera up vagina into uterus to see if there's any structural issues and take samples of anything odd. It's nicer to have as much of that stuff done at the same time while you're under. Be warned you may be pushed for having a coil - the NHS is known for pushing that on women so do your research and ask questions on here pros and cons, then be specific what you want / don't before your lap.

I don't mean to scare you - I just wanted to let you know that it's good to read up and ask everything as it's your body they're opening up. xx

[Confused_con in reply to luthien]

Honestly this information is so helpful, and I genuinely thank you from the bottom of my heart for the advice!

The doctor mentioned the coil on Saturday, in all honesty all I have heard is horror stories about the coil and I am not keen at all for this option. Have you had the coil or been pushed for it?

Another question, apologies for this but what pain relief do you have and when you had the excision's did it make the recovery that little bit longer? xxx

[luthien in reply to Confused_con]

Luckily I've not been pushed for it as I've had a great specialist whom could see I tried the pill for years and hasn't worked. He was very nice and adamant that it's always best to see what endo I have then excise it, then let things be and see how my symptoms are as to what to do next. To be honest I'm happy with no hormones; my endo symptoms are now just the week round my period and just feel like an almost normal period; a bit heavy, some period cramps and bloating but all soooo much more manageable. I don't like any medication so I'm looking into aromatherapy and acupuncture for the future and just enjoying my freedom. I may need more laps in the future but I'll worry about that later, I like being medication free!

I don't really need any pain relief any more, if I do it's just paracetamol and ibuprofen

The excision does make recovery that bit longer because it's invasive but I feel it's so much better, and the evidence shows that excision is the best at slowing down regrowth.

xx

[Confused_con in reply to luthien]

Well thank you for the useful advice, I've just had my GP on the phone and the doctor I saw on Saturday hasn't put an urgent lap on the letter.

So yet again I feel like I've taken a few more steps back, I know I won't get an appointment straight away but I am sure she said an urgent one would be arranged.

xxx

[lslo23]

I was back to work after 3/4 days after my first lap last year, exercise and sex I waited 4 weeks until I started again. It'll depend more on where they found it and how it's removed I believe.

I had diathermy (endo burnt off) but I'm now on a waiting list for another lap to get the tissue excised as all my symptoms came back. I was only symptom free for 2 months so if they say to you about excision I'd definitely accept that!

It's so scary when they say about the surgery but if they manage to diagnose/remove it you will feel a million times better! xx

[Confused_con in reply to lslo23]

I'm so sorry you're only symptom free for 2 months, how frustrating, they obviously didn't removed everything then?

Thank you for the advice, I am really nervous about the surgery but if any endo is found I want it gone ASAP! I'm having breakthrough bleeding today and I am in so much pain, if someone offered me a hysterectomy tomorrow I'd take it no hesitation! xxx

[lslo23 in reply to Confused_con]

Oh bless you! I honestly think unless you have gone through this you never know how bad the pain is!

I'm back on the list for another lap but the main thing that my new gynae stressed was that the diathermy is very outdated and that it only removes it superficially which is what the last doctor did. So when I go back in again I will be having the tissue excised.

It's very frustrating as I'm desperate to have a baby but as the waiting list is a year I'm going back on hormone treatments to help with the symptoms for the time being.

Fingers crossed for you that you can get the answers and resolution you want!xx

[Confused_con in reply to lslo23]

Thank you so much, and I hope you get an appointment sooner rather than later, and good luck with the baby plans, I've got my fingers crossed for you xxx

[ali_cupcake]

I’m currently under a private specialist too. The consultant I saw under the NHS sent me for an MRI scan as he was unsure. The MRI showed deep seated Endometriosis in the pouch of Douglas and Ovarian cysts. After the diagnosis from the scan he decided that he wanted to do a laparoscopy. I got a date for the op at the end of March and the date for the op was 30 July! I thought this was ridiculous! I was then messed about from a phone call from the hospital saying they’d made a mistake on the letter, they said they could fit me in on the 30th June. This still wasn’t good enough as I was put down as urgent and I was told I was going to be operated on within 5-6 weeks. I had enough so I chose to get referred privately by my GP. My GP was so helpful. I went to see my private consultant for the first time last week and even though I’d seen a gene specialist before it was actually the first time I felt like I’d been listened to and I wasn’t going insane in the head! I have a date for my laparoscopy on 23rd April and things are looking up! My private consultant told me that the recovery time was 4-6 weeks and after that I should be able to get back doing my normal day to day things. Regarding the pain I’m on an oramorph daily along with other painkillers like paracetamol and ibuprofen. Best of luck xx