Do I need a laparoscopy? : Hi everyone, I... - Endometriosis UK

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Do I need a laparoscopy?

Natalie02
Natalie02
35 Replies

Hi everyone,

I’ve done a similar post before but am still confused.

A while ago I had a second internal scan done and after a while the doctors agreed it looked like endo.

I asked my GP to be referred to the endo specialist to get it confirmed and talk through options, but was told by the GP unless I specifically wanted surgery to remove the endo then there was no point. She told me the scan had confirmed I had endo, and she put me on a pill to control symptoms (Yacella). I thought great, done and dusted, I have endo I need to deal with it and take my pill.

Yesterday I went for a second colposcopy for the investigation into why I have pain and bleeding during and after sex. The doctor was extremely confused how I’d been given a diagnosis without a laparoscopy, he told me I would need one for an endo diagnosis.

So I’m confused as to whether I should be pushing to see the specialist or not?

My aim is not to have surgery if I can avoid it as I’ve heard it can make it worse by leaving more scars, and I believe it can be controlled for now, but I want an actual diagnosis if I’ve not been given one?

I’d appreciate any help anyone can offer me please!

Thank you,

Natalie x

35 Replies
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Kangalou

I believe the only definitive way to diagnose endo is via a laparoscopy. My understanding is that scans -particularly MRIs - can be helpful but are not conclusive.

If the pill is working for you and reducing your pain, then you have the symptoms under control. You can infer you have endo from that - but essentially still not have an official diagnosis.

If you want a definitive answer, I think the laparoscopy is the only way. If you had one you could get any existing endo treated and get the best treatment plan based on what they find. However, as you say, it’s an op, so carries some risk.

I don’t know if that helps?

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Natalie02
Natalie02
in reply to Kangalou

Thank you that is helpful! Just found it all very confusing and wasn’t really sure where I stood you know? Thank you!

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Christin_a

Hello yes I agree with kangalou. Only definite way to get confirmed diagnosis is a lap.

Imaging may be able to suggest it but it's only a suggestion not a confirmed diagnosis.

But if you really don't want surgery and the pill has made you symptoms controlled in not sure what an endo specialist could offer. Until you are at that point of wanting or contemplating surgery.

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Natalie02

Okay great so you think it’s not worth seeing the specialist until symptoms aren’t controlled by conservative measures anymore? Thank you!

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Pippa198

Hi, I was diagnosed through an ultrasound when I was 20.

I only had surgery because they found endometriomas (chocolate cysts) which don’t go away on there own. Surgery help my symptoms, as they removed endometriosis aswell as the cysts and I felt brilliant for about 3 years.

My scans now are MRI only as I now have stage 4 endometriosis and I’m always told that scans, even MRI, don’t always give an accurate picture of what’s going on with endo.

Laparoscopy is the only way to confirm, if you do decide to go down this route ensure it’s done by an endometriosis specialist consultant not just a gynaecologist.

endometriosis-uk.org/gettin...

This website is helpful.

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Natalie02
Natalie02
in reply to Pippa198

That’s really helpful, thank you!!

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Natalie02
Natalie02
in reply to Pippa198

Sorry, another question. When you say stage 4, does everyone have a stage? Do I need to know my stage or is this only if it gets more severe?

Currently I’m in pain every day but am still able to get on with my day to day life minus a few days in the month where the pain is unbearable and not helped with painkillers.

This is why I’m wary of getting surgery done - drs have advised me that because I’m so young they’re wary of surgery making it worse. Currently it’s liveable and I know people have it much worse.

I’m just really confused sorry! I feel like I need to speak to a dr about all these things but no one seems to have answers or want to listen!

Sorry to rant!

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Pippa198
Pippa198
in reply to Natalie02

I’ve only recently learnt that they put endo diagnosis into stages, so maybe it’s a new thing. All the stage determines is treatment options available and pathway through the NHS treatment system.

It’s completely up to you about surgery, if your managing and happy to continue as you are the don’t have it. But laparoscopy is reportedly the only way to confirm diagnosis - doesn’t mean it’s essential to have one if you don’t want to.

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Rin9
Rin9
in reply to Natalie02

If you're in pain everyday then you might have pretty bad Endo that obviously isn't really being controlled by the pill. I'm in the same boat. But I pushed for the specialist to know what's going on. My surgery is this coming Wednesday and they're going to hopefully find what's wrong. It's probably endometriosis but there's always the chance it's something else if I were you I'd push for laparoscopic surgery. I have a phobia of docs and hospitals but I'm only 26 years old. I don't want to just live with the pain I want a diagnosis of what stage it is and what the best option is to treat it and they can only do that with a lap. Not to mention one day I want to have kids so I need to know how bad it is and where it is. But I can completely understand not wanting to have surgery. It boils down to what are you willing to live with. Pain everyday, pain during sex, different medication to try to control it or having them go in there figure it out and how best to deal with whatever stage it is. You never know it might not be endo. But in the end you have to do what's right for you. Listen to your body it knows what's going on you just have to try and interpret what it's telling you. I wish you the best of luck with whatever you choose.

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Natalie02
Natalie02
in reply to Rin9

Thank you that’s a really good point of view and thank you for sharing! I hope your surgery goes well🤞 sending love xx

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Rin9
Rin9
in reply to Natalie02

Thanks I hope so too. I'll let you know how it goes 😀

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Natalie02
Natalie02
in reply to Rin9

Yes please do!! Send me a private message afterwards❤️

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Rin9
Rin9
in reply to Natalie02

I'll definitely do that. Keep your fingers crossed for me!!!

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Natalie02
Natalie02
in reply to Rin9

Always🤞

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KGDI

Hello Natalie02

I know that the gold standard is a laparoscopy for diagnosis of endometriosis but that’s not to say imaging methods cannot confirm this. I was initially informed of my endometriosis via trans vaginal ultrasound which clearly showed scar tissue, cysts and an endometrioma.

You can check literature on Pubmed to confirm that some imaging methods can show endometriosis. This depends on the scientific protocol they use on the specific imaging equipment. However to have NICE recommended method, a laparoscopy is required. During your laparoscopy your surgeon will confirm the endometriosis but they will also take samples for pathology testing. You will be able to discuss these aspects with your gynaecologist.

I understand why your GP has put you on the pill because this is usually the first method used to try and control the growth and spread of the endometriosis. In my early 20s I was also prescribed these but I couldn’t continue with any of them because I developed an intolerance and started to get migraines which lasted up to 5-7 days. As a result of this I wasn’t able to control the growth of my endometriosis using hormonal treatments. Also, as endometriosis is complex and every person is different in terms how they respond to certain treatments, be aware that treating this condition will be slightly complex and we you get older, this will further complicate things because hormonal imbalances within your body also play a part. You can control the disease growth and pain long term using multiple methods so it’s best to discuss all your options with a gynaecologist. I hope this helps.

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Natalie02
Natalie02
in reply to KGDI

Hi KGDI, that is very helpful thank you. I wasn’t aware it could be confirmed through imaging methods, thank you! That makes me feel better about it all. When you say ‘to have NICE recommended method’ what is that? I haven’t heard that yet. Still quite new to it all, so trying to pick up on all the lingo.

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KGDI
KGDI
in reply to Natalie02

So NICE is an independent organisation that provides recommendations for treatment and management of various diseases. Their recommendations are valid in the UK and they have no reach beyond the UK to influence any practices. Their guidelines are based upon scientific evidence available ie publications that have been peer reviewed and published in various journals. I’ve written a post on my wall about NICE and there’s a link you can use to find out more information. You can also contact them if you want to discuss anything specific you want. Hope this helps.

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Natalie02
Natalie02
in reply to KGDI

That’s very helpful, I didn’t know about them! Thank you KGDI!

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KGDI
KGDI
in reply to Natalie02

Something you may also want to look into is to speak to a Gyna-Radiology specialist which would be a consultant radiologist. Your gynaecologists rely on radiologists in this field to develop new imaging methods to better view your disease growth. There’s around 8 centres in the UK that can perform this type of work. Oxford University Hospitals NHS Foundation Trust has a specialist MRI scanner that uses novel methods specific to women who have endometriosis. You can also contact them directly if you are interested in finding out more and also consider taking part in some of their patient public discussions they hold for endometriosis patients. ouh.nhs.uk/services/referra...

No problem. I hope you get the support you need to manage it. All the best!

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Sprinkles86

Surgery is the only definitive way to diagnose endo unfortunately. I had two laparoscopies, one to remove my tube (for fertility reasons) where they found the endo, and one to excise the endo. The second op changed my life. I was pain free 99% of the month and had a new lease of life. I would definitely push for the specialist and the surgery, but it does need to be done by an expert in endo rather than a general gynae surgeon.

I would also look into managing your symptoms through diet as well. If you have your intolerances tested (you can do this online and send a few of your hairs off to be tested), then cut out the ones you are most intolerant of, this helps to reduce inflammation in your body, as well as cutting out as much sugar as you can along with fizzy drinks. This made a big difference for me too as I am four years post op now and still managing through diet (though I will likely need another op at some point as mine was EVERYWHERE and everything was so badly stuck together) xxx

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Natalie02

Thank you, I’ll have to look at my diet! Thank you and I hope your symptoms stay manageable 🤞xx

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1DayEndoFree_1

Endometriosis Stages:

i.pinimg.com/originals/13/f...

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Natalie02

Thank you xx

1 like
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1DayEndoFree_1

From reading your past posts i would definitely get a referral to a experienced Endometriosis specialist.

See a BSGE Endometriosis Specialist at one of the BSGE centres nearest you

bsge.org.uk/centre/

or Nook Endometriosis specialist (who I’ve had recent surgery with). You can get Surgeon list by following this link:

facebook.com/groups/4181369...

Join ‘Nancy’s Nook Endometriosis Education Group’ to empower yourself with knowledge of Endometriosis.

As it’s a closed group you have to answer 3 security questions and then you have to wait a week before you can comment or like posts. This is so you can read the ‘Basic Introduction to Endometriosis Files’.

This is an Education Group not a Support or Discussion Group.

The pill is supposed to ease the pain and regulate menstrual bleeding (not for all sufferers!) .... it masks the Endometriosis symptoms it does not stop growth and spread (may slow it down a bit).

I was diagnosed with Endometriosis in 2000 through a laparoscopy. My gynaecologist was not an experienced Endometriosis specialist so performed ‘ablation’. This basically burns off the top layer of Endometriosis so does not stop regrowth only expert ‘Excision’ by a experienced/trained Endometriosis specialist can do this otherwise they can do more harm than good. Also these Endometriosis specialists have the training and experience to recognise Endometriosis during a laparoscopy.

I was put on pill to help symptoms but came off it in 2010 due to a DVT. In 2017 my symptoms became more extreme, more frequent and more painful so got another referral. Had another laparoscopy. Told needed a hysterectomy which by the way does not stop Endometriosis as Endometriosis produces its own oestrogen. Did my research through Nancy’s Nook Endometriosis Education Group and asked my inexperienced gynaecologist to refer me to a Nook Surgeon (nearest one in Surgeon list).

Got an MRI to see how far the Endometriosis has spread and diagnosis from this was Stage 4 Deep Infiltrating Endometriosis.

I have recently had a total hysterectomy, oopherectomy and excision surgery Recovering at the moment.

All I can say is please don’t wait like I did and do your research otherwise you could be in the same situation.

Reading your past posts I would definitely seek an expert gynaecologist.

Hope this helps.

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Natalie02

Thank you that’s really helpful, thank you for taking the time to read my posts and tell me all of that. Will definitely do some more research - I don’t know about you I just find the research so overwhelming, that’s why I end up giving up and asking on here! I feel massively lost with it all as no one around me knows anything about endometriosis and they just don’t get it!! Sorry a bit rambly, just feel a bit lost and confused - it really does affect your mental health as well as physical doesn’t it x

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1DayEndoFree_1

Yes, definitely effects you both physically and mentally. As it’s invisible to people, no outward signs, they find it very hard to understand.

It was a constant battle for me getting through the day, suffering with all the symptoms. In the end I was off work 4/5days every month. Was very lucky to have such an understanding employer.

It is a lot of information to take in, even for me with a science (applied biology) background. That’s why these forums do help but sometimes the wrong information is given also, unknowingly. Also if a dr tells you something you tend to believe what they say as they are the professional. They are not always right in many Endometriosis cases and this is quite common, reading a lot of people’s posts. I think a lot of general gynaecologists need more up to date training in Endometriosis. I also think that some gynaecologists and even drs are very quick to recommend going on certain drug treatments ie. Zoladex, Orilissa etc ( I sometimes wonder! 😏)These drug treatments can sometimes give you worse side effects and they can become permanent in some cases if taken too long.

I hope you find some answers and feel more empowered to make the right decision for yourself. 🙂

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Natalie02

Wow, thank you! Yes you’re right endometriosis doesn’t seem to be well known with general doctors and gyno’s does it?! My GP admitted she knew ‘nothing about it’. Thank you so much for everything xx

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Love_koffy

The only way to confirm endo is by laparoscopy I had a key hole surgery which confirmed it, and an MRI confirmed I have stage 4 endometriosis with two cysts one on each ovary measuring 8cm and 5cm, and apparently I will lose some ovary during surgery, also my bowels are badly affected by the endo and my surgery will be a joint one with the bowel surgeon they said I am an urgent case and was reassured I would be put on the list for surgery in march 2019 and whilst i wait for surgery I need to take the menopause injection to stop further growth/ spread of endo, I am on month 6, i still bleed every month and as it stands I haven't even been put on the lost for surgery... Basically you need to push to be seen by the specialist and put you on the lost for laparoscopy coz the wait is forever long as it is...

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Natalie02

God what a long wait I’m so sorry to hear this! I hope they sort it all for you soon, I’ll get pushing!! Thank you so much xx

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jolene333

Hiya natalie i had my 1st lap 3 weeks ago because i have endo, at 1st it was just meant to a diagnostic but when they went in they removed the endo plus 2 large cysts i didnt know i had, in 2 months time i will be going for ovarian suppression treatment meaning going into menopause at 33 only for a few months just to kill of any endo thats left, im glad i went for the surgery cause now my doctor knows i wasnt bullshitting and if it happens again they will know what the problem is, the pain i was in was debilitating just awful with endo so hopefully im on the road to recovery the scars are tiny i wouldnt worry to much about it, hope you get the help u need i feel for you xx

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Natalie02
Natalie02
in reply to jolene333

Thank you that’s good to hear! I’ve been scared with stories of scars being left and making it worse! Glad to hear the doctors are taking you serious - one of the worst things is when they think you’re just being a drama queen! Thank you for sharing xx

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Kath85

Hi, as far as I’m aware the only way of knowing you have endo is through a laparoscopic. I had several scans years ago and it was never picked up that I had it. It was only when I had a laparoscopic they told me I had it. I have few symptoms but yet mine is stage 4.

For peace of mind I’d have one just so you know what’s happening in your body. Surgery will only be performed if needed.

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Natalie02
Natalie02
in reply to Kath85

Thank you!

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Waites92

Hi Natalie,

Getting a diagnosis was important for me as it helped me deal with having Endo. I was told that a laparoscopy was the best thing to do to get a true diagnosis, it meant they were able to find the stage of Endo I had and how we could go to helping me cope with it.

I tried many different methods first and they didn't reduce pain but only temporarily, I have now been through 2 laparoscopies (1st one worked for 6 months, 2nd didn't help at all) but this meant I could move on to another method. I hated the idea of the operations but I knew if it would help me and the doctors know more it was important.

I have had other friends go through this and the doctors kept finding other conclusions to her pain and problems till she had the laparoscopy, now she is finally getting the right treatment.

Hope these stories make your decision clearer - if they make it more confusing I'm sorry.

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Natalie02
Natalie02
in reply to Waites92

Thank you very much! They help greatly, thank you.

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