Newly diagnosed stage 4 endo after going ... - Endometriosis UK

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Newly diagnosed stage 4 endo after going private

Jayne_Fairy profile image
Jayne_Fairy

Hi everyone, hoping for advice and support 💗🙏

I’ve recently been diagnosed with stage 4 endo after going to a private gynaecologist and had my laparoscopy a few weeks ago.

I’ve suffered with horrific periods since my very first one nearly 15 years ago. I go to see the GP every so often maybe each year about period issues (horrific pain etc) and they have never helped me or believed me. I started developing new symptoms of an ovarian cyst a while back it was awful pain for 2 weeks. A new GP gave me a gynae referral but the wait for the app was 6months that’s before any wait for scans or surgery. This prompted me to go private.

I was diagnosed with stage 4 endo after a verbal consultation. I then had a vaginal ultrasound which revealed an endometrioma cyst. A few weeks later I had my laparoscopy done which confirmed the diagnosis. I’m amazed how quickly this has all happened, something I’ve basically been waiting my whole adult life for. I’m relived to be believed! But my mental health is struggling with it all.

Has anyone else paid to go private for surgery? How did you find it? I’m so glad I got sorted but there’s basically no aftercare which is disappointing. I’m hoping to go back to my GP soon and explain what’s happened so I can get referred to a gynaecologist in the NHS for support/monitoring. I guess to be on the radar so I don’t have to pay for anymore private care. Really interested to hear if anyone else has gone down this route.

Lots of love and well wishes to you all 🙏💗⭐️

26 Replies

Hi,

Does the gynaecologist you saw privately work in the NHS also? They should be able to transfer you over to the NHS that way.

I’m unsure but this is definitely something I can ask. I have requested a telephone follow up so hopefully he can give me some advice 🤞🏻

HI

With the pain that you have got they sound like they are called chocolate drops

inside- these will be the cause of pain as its blood that not gone out of the body.

The gynae will be aware of - plus when you next see your GP - he or she will be

able to help with pain relief- but try natural products to ease the pain first-

Rest up ,gentle walks etc

best wishes

Jayne_Fairy profile image
Jayne_Fairy in reply to Pinkmice

Thanks for your response :-) definitely have lots of questions for the GP hopefully now I have the diagnosis I will get more help

Did you have any removal of endometriosis?? Or was it just a diagnostic laparoscopy?? If so you can get your doctor to refer you to a bsge gyane and get all your notes together.

Jayne_Fairy profile image
Jayne_Fairy in reply to Cr2021

I had removal of all the endometriosis tissue and the cyst. I’m still getting nerve problems like sciatica so it worries me the endo could have spread deeper and is causing that. That’s kind of why I want to get help through NHS for following up etc. Fingers crossed nothing comes back anytime soon but I guess we never know with endo! Hopefully he can help refer me 🤞🏻

Cr2021 profile image
Cr2021 in reply to Jayne_Fairy

Hmmm ok I dont know how it will work..sorry..I am under a nhs bsge gyane and you stay on their records and have follow ups it's really good service I've had my 2nd ablation/ removal of endo with him and his team and been under him for 4 years so far...you may need to look into it and see if you can get your gp to refer you...

Jayne_Fairy profile image
Jayne_Fairy in reply to Cr2021

Thanks for sharing this info :-)

I think MRI scan would show it.

I too saw a leading Gynae privately, when I realised I wasn't going to get anywhere. He too arranged for an NHS, op ... and my life improved astronomically after wards. In my case I just had a mirena coil fitted, but as I was already in my 50s I was happy with that, after a near-lifetime of getting nowhere! I'd had 2 laps, one in my late 30s, when they said there wasn't much there and not worth removing - as might make it worse - so I was told to go back on the pill (I spent most of my life on the pill - I've never wanted children). Of course, we now know that 'not much' is fairly irrelevant when it comes to endo tissue ... as it depends on exactly where the endo tissue is, what type of endo tissue it is ... and whether they have done a good enough search!! A lot of general gynaes still don't know where and how to search all of the 'difficult to access' parts of the abdominal cavity, or how to recognise all the different types of endo tissue).

My 2nd lap, in my very early 50s, removed a lot of the endo, and I had about 3-4 months of bliss ... followed by even worse pain! After only a few months I saw the private gynae ... I just wish I'd done it in my 30s.

Oh wow good to know! I turn 30 very soon so I’m glad I’ve had all the endo removed. My first period since the op isn’t going too well though thrown up, heavy, pain etc but hopefully it will settle soon and I will see the benefits. I will ask the private consultant if he can support me going through the NHS in the future 🤞🏻

Did they provide any kind of monitoring after your diagnosis?

I was told to get back to the NHs doc who did the op, but I don't need to. Take care, hope it works and stays working!

Me too fingers crossed! Thank you, you too :-)

Hello. I paid $4k, probably the equivalent of 3,000 pounds , for a lap , and no regrets. stage 4 endometriosis . Was 32 and trying to conceive at the time. Needed answers and time wasn’t on my side from a fertility standpoint. Most healthcare in US is private. It took 2 years to repay the hospital bill. But it was worth it as then at least I had an answer as to why I couldn’t get pregnant. Answers that were very hard to hear at the time but did help me make up my mind for how I wanted to proceed next as far as becoming a mom IVF, adoption, foster, remain child free. (IVF is not covered for all. It would cost me 35,000 pounds or more) Our health systems are so different but in one way very similar and that is how we as women are treated with this disease, the research or lack there of, how much pain we are almost expected to tolerate, etc. I don’t say this in a negative way really. I’m trying to focus on positives and that is a positive in that no matter where you live on this earth all of us women are United when it comes to this disease. I signed up for the Phendo app. It tracks symptoms but on a larger scale it informs research so I hope in my small way I am helping get answers for better treatment. Wishing you the best😎

Thanks for sharing! My surgery was around £4k but I think your right if it works it’s going to be worth it. I’m turning 30 soon and have no children, it’s not something I haven’t thought about but now obviously I’m worried about fertility issues. Something I was hoping to talk to the GP about. Yes definitely it’s terrible we have to go through all of this but also nice to know I’m not the only one.will check out the app :-) thanks you too

I am waiting for my laparo and my consultant said it sound like its stage 4!Good luck to all the endo ladies!

Oh bless you! Good luck with everything, if you want to ask any questions or need advice about the lap feel free to message me :-) don’t underestimate your recovery time! 2 weeks at least I would say

Ah thanks i do physical work so yes I would need at least two weeks off!My op will be within nhs( i live in the uk)

And my hospital appointment was nhs and i was so happy that eventually something is going to happen!

Im 42 and had 3 unsuccessful ivfs so this is my last 🛎 if you know what i mean.

What was your symptoms if you don’t mind me asking?

I never suffered with heavy periods but always had pain during intercourse and its been maybe 7 years when i have painful bowel movements and pain in my right shoulder every single month couple days before my period.

I’m UK and NHS too but despite years of GP trips never been taking seriously despite my episodes of pain! Sorry to hear about you unsuccessful IVFs, fingers crossed for you.

My symptoms since i had my first period was excruciating pain that has me rolling around the floor in agony which lasts maybe an hour then comes in waves as it eases off. A few hours later it’s like nothing ever happened! Pain so bad I’ve had to leave school and as an adult go home from work. Also very bad diarrhoea and feeling faint/nearly passing out. Always had bad bowel problems and muscular issues like neck/back pain.

Ive been on the implant for around 4 years which totally stopped my periods. So my pain episodes maybe only once a year. My consultant said it was masking the symptoms of endo (or helping whatever way you look at it) which is why I don’t get the horrific pain every month.

Last year I started to get irregular bleeding (bleeding for 3 weeks) and back pain nausea throwing up during periods. Symptoms outside of my ‘normal’ symptoms I thought I had an ovarian cyst which prompted me back to the GP. Got a gynae referral but went private and now diagnosis and treatment has all happened so quickly! I have also had sciatica for 3 years in one leg - consultant said this could be from endo too.

I have a telephone consultant tonight so hoping to ask more questions about nerve problems and fertility. I’m 30 soon so I guess I need to start thinking about this!

Good luck with everything

Ah fingers crossed for you. Gosh my symptoms sounds nothing to compare to yours! You poor thing. My Fallopian tubes and ovaries are clear so it must be somewhere else.

I know of many women who have had to go to A&E in agony from the endo pain. Eeeek! It’s just mad how bad it can get. My endo was /is stage 4 so multiple areas and partially stuck to my bowel. So glad my ovaries seem ok so fingers crossed they will work! Haha 🤞🏻

Heya, I’m glad you were finally able to have surgery and get your diagnosis. I ended up going private in the end as I am trying to conceive a second child and the pain was really bad and they told me there was a 1000 people in front of me on the waiting list for the NHS. I also had a large cyst that I was so worried might rupture. Anyway I ended up finding a Dr who was also an NHS Dr in the main hospital where I live and specialising in Endo. The problem I’ve got now is that pain is worsening and it’s difficult to know who to get advice from. I’m having to chase up at the NHS hospital to see if I’m on the list for a 6 month follow up which was mentioned by my consultant. But I haven’t heard anything yet. I’ve got to have an MRI and bowel surgery at some point. I’m in touch with my GP today to get pain advice. I would definitely contact your GP at any point if you are worried about anything or any symptoms and then at least they will have a record of everything. I feel as though I’ve been just putting up with symptoms and wish I had sought advice sooner. I hope your recovery is going well and that you are in less pain. Take care x

Jayne_Fairy profile image
Jayne_Fairy in reply to Roobs33

Oh my that’s a huge waiting list! I hope you can get sorted soon. I was worried about waiting to go through the NHS as I was really suffering with pain I couldn’t cope! Im really glad I was able to get it all done privately but it’s a huge price tag. There are finance options which is good. Wish I had health insurance but too late for that now! Yes that’s a good point always worth chatting about these things with the GP.

Thank you doing much better now except the first period after the op has not been very nice! I hope you can get sorted ASAP! Xx

Roobs33 profile image
Roobs33 in reply to Jayne_Fairy

My first period after the op I think was the worst I’ve ever experienced. But they definitely have improved! I think mine are still painful as I still have the endo present on the bowel xx I hope you continue to recover ok. This group is always good to ask questions and get extra support x

Is the bowel surgery connected to an endo or is it something different?My consultant thinks mine is stage 4 endo and might be stuck to the bowels thats why i have painful bowel movements. Im not sure if i want any surgery on my bowels!

My referral went through in the beginning of October last year but NHS didn’t contact with me until end of April this year(COVID-19) meanwhile when i was waiting for the appointment I decided to go privet but they didn’t replay at all. Can’t wait to see what’s going on inside me!

Yeah the endo is on my bowel. I have a lesion fusing my bowel to my uterus. But they couldn’t operate on that particular bit when I had my laparoscopy because it requires more extensive surgery and with a bowel surgeon present. I’m hoping once I’ve had an MRI to see how bad it is that I can try IVF before having bowel surgery. I get awful pain around when I have my period that lasts at least a week. It’s all in my lower back/front and down my right leg. Feels like I want to chop my leg off! Best of luck to you and I hope that you get some answers after your surgery xxx

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