First laparoscopy : I had my first... - Endometriosis UK

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First laparoscopy

frankiethrower profile image
20 Replies

I had my first laparoscopy & cystoscopy yesterday and had an all clear result. When I asked the consultant if I can have any further tests to work out what’s causing the pain/bleeding/other linked symptoms I was told “there’s nothing wrong with me” and that’s it, there’s no more follow up appointments. I’m only 22 but have had the symptoms for nearly 4 years and am getting extremely frustrated that no one can find any cause for my symptoms 😢

Has anyone had any experience of going private to try and get more results? Just the thought of continuing to live with the constant pain, bleeding and other symptoms really makes me feel down.

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frankiethrower
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20 Replies
cardif profile image
cardif

Are you up to date with smear tests? I had unusual bleeding for the last 7 months and they did colposcopy and biopsy and I found out I have pre-cancer cells on my cervix. I advise you to follow your instincts and search for the answer. My smear test 4 months ago looked normal and now I am with abnormal cells on my cervix.

frankiethrower profile image
frankiethrower in reply tocardif

Ive been told I can’t have a smear test through the NHS until I’m 25 😔 do you know if you can pay to have one done privately?

StefaniaJW profile image
StefaniaJW in reply tofrankiethrower

That's ridiculous!! You need one from the first year in which you started having sexual intercourse!

frankiethrower profile image
frankiethrower in reply toStefaniaJW

They don’t offer them until you’re 25 and whenever I’ve asked for one have been told I can’t request it until I’m 24 1/2 😔 I think the only way I’m going to have one is to pay privately but even some private companies won’t do one under 25 x

StefaniaJW profile image
StefaniaJW in reply tofrankiethrower

You should pay for it and go for it. You should take one every three years from the first year in which you have started being sexually active

Vickysponge357 profile image
Vickysponge357 in reply tofrankiethrower

Have you considered going to a different GP surgery?

There’s a few of us girls in work having gynea problems, I am over 25 so smear is no issue for me but the other two are under. One is 24 and is being declined a smear but has family history of cervical cancer but they won’t do one til she is 25 later in the year, the other girl is 22 and is signed up with a different gp practice, went in with gynea symptoms and a smear was the first thing they did. Some times I think it depends on which gp you see!

frankiethrower profile image
frankiethrower in reply toVickysponge357

I have just had to change GP surgeries due to moving house so I’ll try and see if they’ll let me have one. Every GP at the old surgery said I couldn’t have one until 25. I suppose I just have to keep pushing until they either do one or refer me for a private one?

Bluebell1019 profile image
Bluebell1019 in reply tofrankiethrower

Hi, I’m 18 and it’s really really frustrating. Luckily my dad got a health insurance policy through work. I’m having a laprascopy but I firmly believe a smear test would have been a better place to start!! (Most of The surgery cost is covered and I’m having it private) but the policy doesn’t cover tests such as smears. You need to google it and see if there is a woman’s health centre near you :)

frankiethrower profile image
frankiethrower in reply toBluebell1019

Thank you. Will google to see if they have any women’s centres 😊

mandm21 profile image
mandm21

sorry you did not get the answers you wanted, don't give up, its so hard battling to get diagnosed when you are in constant pain, I am looking into going private too for the first consultation but not sure what to do either to help my daughter whose 17 x

frankiethrower profile image
frankiethrower in reply tomandm21

It’s so difficult to know what to do and it’s so expensive to go private x

luthien profile image
luthien

Hello, I had all my stuff done privately after getting no where with the NHS so happy to answer any questions.

If you don't quite want to go private you can have a look for a specialist center near you on the BSGE website, they're endo specialists. Was your lap done by general gynae? as sometimes they can miss endo.

You can go private, it's reatively simple to do but first you'll need to check how you're paying as it can be expensive. Workplaces do medical insurance which covers the cost, you can sign up to that and the insurance website will list all specialists they cover so you can choose. Or if you don't have that but have a partner they can sometimes get it through their work. Otherwise find a private hospital you like, look up their specialists - via the web, do a bit of research and ask the center how they accept payments; quite often they have payment plans or let you know which medical insurance you can take out yourself like BUPA.

For an idea of how it all works, search for my specialist Mr Philip Kaloo, that'll give you an idea of what searches come up and under what centers / websites and his specilalities.

Some specialists work privately but can see you on their NHS register which can speed up appointments privately and free surgery via the NHS.

Smear tests and all that can be done privately, including ultrasounds, biopsies, etc...

I'm very familiar with the process of private so can run through it all with anyone xx

frankiethrower profile image
frankiethrower in reply toluthien

Would you suggest just having a consultation with a private doctor? When I was told the waiting time for my laparoscopy I looked into doing that privately and it was really expensive. Unfortunately I work for a small company so don’t have any medical insurance through them. I just don’t really know where to go from here 😔

luthien profile image
luthien in reply tofrankiethrower

You can just go for the consultation with the private consultant, it'll cost about £200. Private consultants still need to work under the NHS for a certain number of days per month. Find one you like, call and talk to their secretary to find out how their appointments work - usually you just choose a day from the available dates, it can be the same week. The specialist may be able to see you initially under private and then operate via NHS but you'll be subject to NHS wait times. Private will want to see you first as you'll be under the care of that endo specialist all the way through, it's not like the NHS where you just get appointments / operation dates with different people. You could have your consultation in a week and be booked in for a lap the week after - it can be that quick. I took a bit more time and booked stuff a bit further apart as I needed to plan round work / training / holiday / hubby work etc.

I felt private was a lot more thorough and talked to me like a person, a real person, not a number or statistic. They want to help you through the journey and you can call the secretary to talk through anything; I even got them to write a summary of what was found during the lap, what was done and what the next steps are for work so that it was on record. I called when I was recovering from my lap (the next day) as I'd forgotten something that was talked about!!

You can contact an individual private hospital near you, definitely do that first before crossing it off as an idea!

My largest one is Nuffield Health Hospital Cheltenham, they gave me a list of all the other private hospitals / centers near by for which the specialists I was interested in also worked at - they do some days at one and some days at the others. Quite often, as I mentioned each hospital does do payment plans etc so you can have it covered by your own personal insurance. Yes it does cost but it's so much better care, I feel, and it's the same as all the other countries that just have private healthcare. We're very few that have the free healthcare and as much as I do like it and think it's beneficial, I just don't think the specialists are there, and the care seems to be a bit lacking, it's a get you through the system as fast as they can and let you deal with the "what next" as they've done their checklist. Don't get me wrong there are some great specialists under the NHS but they're still under pressure.

IndigoMoon1234 profile image
IndigoMoon1234

Same thing happened to me. Laparoscopy was clear and the gynaecologist told me there was nothing wrong with me - even though my periods lasted 20 days a month and was in excruciating pain. 9 months later a CT scan revealed a 6cm endometrioma on my right ovary.

For some reason, (some) doctors seem to be very dismissive of 'woman's problems'. You should not be suffering like that. Be presistent until you get the answers and treatment you need..

Best of luck to you xx

frankiethrower profile image
frankiethrower in reply toIndigoMoon1234

What did you do after your laparoscopy as I’ve been told I don’t need any follow up appointments? Have you gone back through GP?

IndigoMoon1234 profile image
IndigoMoon1234 in reply tofrankiethrower

I was already on the waiting list to see an endo specialist but was sent to a different hospital because the pain got really bad and that was where I had the lap.

A lot of ladies on here have stated that general gynaecologists can miss endometriosis during laps. That is one possibility. Another could be that you have a different condition.

You should go back to your GP to discuss your options. You might ask for a referral to a different gynaecologist. If the pain gets really unbearable call out the on call doctor or go to A&E so they can document the extent of the problem. Maybe ask for a referral to an endo clinic.

It is crazy that women should be expected to endure excessive pain and bleeding and yet be told there is nothing wrong with them. I wonder if it would be the same if men had to endure it....

Just so you know...you are not alone. I spoke to 2 young nurses on my last two hospital visits. They were both told there was nothing wrong with them and the doctors implied it was all on their heads even though they were nurses! Both were subsequently diagnosed with endo.

I hope you get the help you need. Good luck xx

frankiethrower profile image
frankiethrower in reply toIndigoMoon1234

Thank you for replying. I often feel like I’m not listened to because of my age :(. Will go back to the GP and see where I go from there I guess x

StefaniaJW profile image
StefaniaJW

A NON-ENDO SPECIALIST WILL NEVER BE ABLE TO DETECT ANYTHING. If the surgery was not an excision surgery and the surgeon not specialised, I'm afraid it was pointless and you will need another one soon.

I suggest you join the Nancy Nook group and look up the Surgeons International file and search for an expert in your area.

Have you ever been on birth control? Have you ever followed an endo diet?

frankiethrower profile image
frankiethrower

What is the Nancy Nook group? I have been on birth control since I was 15 (nearly 8 years!) but havent followed an endo diet. Do you have any tips?

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