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Endometriosis UK
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Potential Endo diagnosis awaiting laparoscopy and I'm terrified.

Hi All

I'm 40 years old, my severe abdominal and rectal pain started approximately 6 months ago during the first 2 days of my period. I've had internals and ultrasound results come back clear so returned to my GP this morning to hear my symptoms link in with Endometriosis. GP was great and has referred me for a laparoscopy for potential diagnosis and suggested NHS Choices for research which I did, but felt still somewhat lacking in information so I joined the Endometriosis online community support group and did some reading.

I am terrified at the prospect of the laparoscopy and it's recovery time! I have a 5 year old child, an active job on living wage and lead a very active life. At no point was I told the laparoscopy would be invasive and require upto 2 weeks off work and 6 weeks with no intense exercise. Nor that leaving the symptoms untreated is unwise.

Can anybody offer any alternative options or just perhaps some reassurances please? I'm literally scared stiff right now and feeling quite lost in it all.

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Hello!

I am currently sat on the sofa after having my laparoscopy last Wednesday. I too was very anxious about recovery and the general concept of having an operation actually as I'd never had one before.

The procedure itself was absolutely fine, I walked into the operation theatre at 1:30pm and was home watching tv before 5pm.

Recovery has been up and down. Generally, you just have to give your body time to rest. Pain can heighten but I've managed to get it mostly under control. After a couple of days my head was very much with it but my body lacked behind with energy.

My partner took time off work for 3 days so I was very fortunate and I would advise getting whatever help you can especially with the little one. I pottered around the house after a couple of days but struggled walking around the supermarket yesterday so I know I've still got a way to go.

I have suffered with chronic pain etc for many years and got a little tired with the tests for anemia, diabetes etc and no conclusion.

My internal and external ultrasounds also didn't show anything but I wasn't happy with continuing the way I was ,so I kept strong minded about the operation knowing I would have a conclusive answer. I think I almost cancelled about 3 times because I was having a better day.

I'm so glad I didn't as now they have diagnosed endo and I'm hopefully on the road to being able to control it a little more.

This is just my circumstance but please feel free to ask anything. I completely get how you're feeling right now. It doesn't help that you go on a waiting list that seems to take forever !

Take care of yourself :)

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Hello!

Thank you so much for your reply and I'm glad to read your procedure went well and you are home recovering.

Have you been offered any advice on treatment or long term effects following the Laparoscopy? I feel so clueless right now, it seems everybody has different symptoms and treatments and this is all such a bolt out of the blue.

😬

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Being a diagnostic surgery I guess they try not to discuss treatment etc with you prior as it may be unnecessary but at the same time I know it feels like an awful lot to go through without knowing the possible end results.

I wasn't told much detail after the operation. I guess because I wasn't in the most 'conscious' state. I asked the nurse to tell me whether I had it and she confirmed. She also informed me I would receive a follow up appointment via the post. I then had to ask for further info and managed to speak to the surgeon briefly about how much endo was found.

It can take 2-3 months for the surgery to show whether it has improved symptoms so most people's follow ups aren't for 4 months. Some people feel the benefits straight away and live pain free for a few years, and others go on to have further help like hormone treatment.

I must admit I feel a little in limbo right now hence coming onto this site but I guess I need to have a little more patience.

Sorry I can't answer your question any more throughly . It's definitely a case that everyone's outcome is dealt with individually. Hopefully I'll have a better understanding of mine in a few weeks 🤞🏻 .

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Hi

Thank you so much, you've been really helpful and informative. Wishing you a speedy recovery and ultimately positive outcome after everything you've been through.

Take good care of yourself.

xx

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Hi, is your laparoscopy just diagnostic? If so, the recovery time can be quite quick. After my last one, I had less than a week off work, although I needed to take things easy for a few weeks.

Sometimes the surgeon wants to ablate or excise any endo they find, in which case the recovery time could be considerably longer. But you would need to consent for them to do that. You should have the opportunity to discuss this. You have the option of a two stage process, if that feels more manageable.

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Hi

Yes it's been put to me as diagnostic at this stage, awaiting an appointment but I've no idea of potential waiting time.

Thank you for your reply, it's reassuring to know I can do it in two stages if that seems the better option at the time.

I guess it's now a waiting game to discuss everything with a Gynaecologist? Is that who will carry out the laparoscopy?

😬

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Yes, diagnostic laparoscopies are done by gynaecologists. If they are going to do excision, they will often team up with a colorectal surgeon. But that's if they have discovered patches on those organs.

My BSGE gynaecologist himself suggested breaking it into two stages. I think he wanted to take a good look before planning any intervention.

The idea of laps is that they should be straightforward. They make three tiny cuts. I can just still see the one in my belly button (3 stitches), but the other two have disappeared altogether (just one stitch each). Although I was very nervous the first time, I was quite relaxed on the second, once I knew what to expect. They can even re-use the same sites, so you don't get additional scars.

I hope you don't have to wait too long.

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Hi

Thank you so much for your time, advice and reassurances.

I really appreciate it, you've given me something to move forward with and think about ready for my appointment.

Wishing you well, take good care.

Catherine

xx

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Hi just saw this post and felt compelled to respond. I've just joined this group as I'm in bed recovering from my lap and dye and can completely sympathise with how you are feeling. I was absolutely petrified about the procedure before I had it, having never had any kind of op before. But I can honestly say that it was not as bad as I built up in my head. I'm still slowly recovering but the anticipation was far worse then the actual procedure. And you have done the right thing joining a forum like this - I only wish I had while I had been waiting. One thing that did help tho while I waited for my date was yoga - it help me relax and reduced my symptoms. Take care

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Hi

Ahhh thank you so much for getting in touch. I honestly do feel so reassured by everyone's supportive comments. It's all still quite surreal atm, and I'm definitely good at building stuff up in my head to be much worse than it actually is, so maybe in this instance that will come in really handy.

I shall try to remain as positive as I can be, and accept that I have little control over certain aspects of the situation. What I'm most worried about is pain management as my threshold is ridiculously low, but also being unable to run and do my high intensity exercise classes that I so love. Hopefully that's all I'll have to worry about. Fingers crossed.

Thank you all, take very good care of yourselves.

Love,

Catherine

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Hi,

I felt exactly the same I too have a nearly five year old. I was terrified but I must say it's worth it, it was in my case. I feel great now. I had stage 3 endo and my recovery was about a week but it will differ depending on the area and severity plus your ability to bounce back.

Please don't be scared, now I've done it I wonder why I'd made such a fuss. The incisions will be tiny, you'll be a bit groggy at first after the anaesthetic but the only way you'll get better is by taking the chance offered to you.

There's no magic pill to fix endometriosis unfortunately.

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Hi

Thank you for your reply and I'm glad you're on the mend and feeling much better!

May I ask, did you have your laparoscopy in one or two stages, or did they diagnose and treat in one op?

Thanks

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Completed in one operation. They told me it was stage 3 behind my uterus and on my right ovary. Not only this but my uterus was tilted to the left, they corrected this too. Plus I had it in my tubes, they can't be certain the flushed it all out though but I've made dietary changes to try and prevent it from coming back - at least as quick. Stay strong in your head, know that your going through it to make positive changes in your life your doing it for yourself. You'll be absolutely fine xx

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I honestly feel so much better for coming on here and asking for help and support. Thank you.

I'd just like to get it done with now and move on with my life.

Thank you once again ladies, you've all been a great help and I appreciate it.

Take good care,

Catherine

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Hello everyone

Firstly, how is everybody doing since my last post?

I received my Choose and Book referral yesterday, my initial Gynae consultation is November 20th and looking at my local hospitals follow up appointments it looks as though I could be waiting a further 32 weeks should my symptoms be deemed as Endo. This seems lengthy, it is after all a potential 8 more months of pain for the first 2 days of my period. But I do appreciate that my symptoms are relatively recent and they could be much, much more severe than they are so I'm luckier than some in many ways.

Based on this fact, and some of the truly horrifying cases of women who have been let down by GPs and hospitals for years on end, I'm worried that because my hospital doesn't seem to have BSGE accredited consultants or surgeons, I too will be fobbed off after my consultation. My major pelvic pain only began 6 months ago and it seems unheard of to be seen and treated within 12 months?

Can anybody offer any advice on this at all please? I feel like I need to go to the appointment and beef up my symptoms in order for them to be even considered as Endo, when really the GP referral based on symptoms described over several months of visits, internals and ultrasounds bringing back nothing, should be enough to go straight to diagnostic lap?

Hope you're all doing well and feeling brighter than before.

xx

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Hi, i’ve had a diagnostic laparoscopy this afternoon, went in at half 1 and was able to go home at 5.

Have you had your pre op yet? When i had mine the nurse was really informative and gave me the opportunity to ask questions.

Plus gave me information to take home with me about the procedure.

Again when i got to the ward today both the nurse and surgeon gave me information about the procedure and offered me the chance to ask questions.

I did’t realise how much recovery time i would need (a bit optimisit or maybe naive).

They were fantastic helping me to manage the pain this afternoon, but i would make sure you have something like rennies and peppermint tea at home for after.

Good luck with yours

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