How long til a laparoscopy?: Hello! I was... - Endometriosis UK

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How long til a laparoscopy?

Vickysponge357 profile image
9 Replies

Hello!

I was wondering for you lady’s that have had laparoscopies, how long did you have to wait after your gynaecology referrals to then have the laparoscopy to diagnose?

I feel like I have had a long stretch already and I’ve been really questioning if I’m just going a bit mad and if the pain is all in my head as all scans were coming back clear, but then I feel the stabbing pain in my side and the bruised feeling on my back and I know that it is definitely there!

My GP has finally agreed this week to refer me to gynaecology for endo diagnosis but I just still feel like there is such a long way to go between now and then.

As much as I am scared of an endo diagnosis because of the possible effects on fertility, I’m desperate for a diagnosis so that I can stop convincing myself I’m crazy!

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Vickysponge357 profile image
Vickysponge357
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9 Replies

Hi you sound exactly like myself before I was diagnosed!

I think I waited 2-3 months for first gyno appointment. They booked me in for a trans vaginal scan and put me on the mini pill for 3 months to see if it helped with the pain. (Which it didn't) and nothing showed up on scan.

This was the same for all ultrasound, internal scans, ct scans I have had over the years...

Went back to my 2nd gyno appointment 5 months later and they booked me in for a laparoscopy for suspected endo. They kept saying be aware we may not find the cause to your pain.

I got put on the waiting list but the waiting time was approx 8 months. It does vary from place to place. I know some ppl have been seen within 2 months.

I decided to go private with a bsge approved place and had laparoscopy on Monday. They found deep infiltrating endo on left pelvic side wall and under cervix which they cut out (excised) and a small amount on right ovary and appendix.

I would always advise to go with an endo specialist as General gyno arnt as skilled to see it and it can be missed. Also the exision method has a higher chance of it not returning. I no a lot of places just laser it which is not as much of an effective treatment,

I hope you get the answers soon. It is so mentally damaging thinking your going mad and it's all in your head. I was terrified my laparoscopy was going to come back clear. You will have answers eventually and we know our bodies so it's def not in your head. 💛

Neenee1989 profile image
Neenee1989

Hi,

I waited about 8 months since being referred by my GP. Iv recently had my second laparoscopy and both times scans were clear but found endometriosis on both laparoscopys.

Defiantly worth doing. I was prescribed morphine prior to my surgery and now feel like I have a new lease of life.

Good luck

Komodo19 profile image
Komodo19

Hi! I was seeing my gynaecologist for around 2-3 months before making the decision of having a laparoscopy. I had around 3-4 internal scans, nothing was showing on the scans but I kept having the same pain. After making the decision with my gynaecologist to have the laparoscopy which was in August 2018 I got a letter in January, and I had my laparoscopy on the 23rd of January. They found endometriosis but they’ve treated it, they’ve said there’s still a chance it could come back.

Hope you aren’t waiting too long and get some answers. Good luck to you x

BrightLights88 profile image
BrightLights88

Hi

I was tsken to hospital as I had a temp of 39 from the stabbing pains in my ovaries. Within 3 days I was given an internal scan (transvaginal) and they found the endo cyst in my uterus.

I was kept in hospital with pain relief and and within day 5 they referred me to the EGU (emergency gynae unit) I am lucky as my hospital has a specialist endometriosis clinic. WhippsCross in Leytonstone.

after the my referral they monitored me every 3months, so I was diagnosed with this in September 2018, December 2018 was seen by the EGU and they referred me for lapascopy as the endo cyst has started growing more, and I had two more in my ovaries.

In January 2019 I had my pre op assessment and now waiting for my surgery date. all in all 5months.

Louiseboo77 profile image
Louiseboo77

You are not going crazy. They should tell what they find as soon as you are woken up from it. Don't expect to gyne consultant to give you all the answers you are expecting. I hate to say but I have been told I need a hysterectomy but am too high risk to have one. She also told me people with this condition don't get back pain. Which annoyed me as everyone I have spoken gets back pain. You should be better informed after you have it. You should stop thinking you are crazy you know your own body. Take care of you. Xx

Sparklyjo profile image
Sparklyjo

I never had a lap but was diagnosed 2 years ago, that was 4 years after my hysterectomy lol i still get bad pain all the time and bad ovary pain. Don't take and crap hunni ! Hope you get sorted asap xx

MissPoshOxford profile image
MissPoshOxford

Hi lovely,

had an ultrasound in May 2011, a large cyst found, first lap July 2011. Then again May 2012 and September 2012, 4th op January 2016. I have endo stage 4, DIE, frozen pelvis seen twice, the whole works, age now 44. Since diagnosis 7.5 years ago the waiting times have got so much longer, currently waiting 7 months for just a referral to the gynae clinic in Oxfordshire. Once you are free for over a year post op then you have to go back through your doctor to get referred to hospital, rather frustrating. Been struggling with the pain since January of last year, all the best hun. It is a bitch of a disease, the pain management is the hardest. I am currently perimenopause too so hormones all over the place, insomnia, joint pain on top of the endo. Feel as though I have aged 10 years in the last year, hang in there, keep chasing for appt and feedback. Always helped me meeting other sufferers on the ward and talking to others online, you are never alone and the support is great xXx

asoullessstatic profile image
asoullessstatic

Depends on where you are, I’m in the NE of Scotland and was referred to the BSGE centre at Aberdeen. I’ve been waiting 7 months for my first appointment so far, they estimate I'll be seen in June, so I will have waited over a year for my first out patient apointmen t. Apparently the wait list for new appointments is 60 weeks+ here. I’ve got a friend of mine at work who was referred to the same centre, waited 9 months for an appointment and has been waiting 18 months for her lap and still not had it. It really is sadly a roulette on how long you are going to have to wait dependent entirely on where you live and where you have been referred to.

Vickysponge357 profile image
Vickysponge357

Thank you all so much for your replies. It’s so shocking that some ladies have to wait so much longer than others! As disappointing as it is to hear the the first gynea appointment is often so disappointing and that it can still take a while even after that, at least I can go in armed with this information and prepare myself before hand!

It’s such a relief to know that I’m not the only one questioning my sanity!

I have just received my referral letter this morning and my first appointment is the 21st March so only 6 weeks for me to wait.

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