Endometriosis & Adenomyosis discussion thread

[Jdottt13]

All very true. I had severe period pain my whole teenage years from 13 to 25 i was physically sick every single month, had to take time off school and work, was doubled over in pain, fainted, very heavy periods. I never got diagnosed and am still not , i started to take the pill at 25 which eased all my symptoms, took it for about 10 years and came off it about 5 years ago and have felt pain again since.

Im quite amazed now looking back and im nearly 40 now that no one suggested i got help/assessed/ investigated for my extreme pain when it clearly was not normal as you say and it was having a huge effect on my life. Quite sad really as i really did suffer.

Could have written this myself. My teenage years were horrific with period pains. I would have to take that 1st day off school due to intense pain and throwing up. Wasn’t until I had my first baby and midwife said I was coping so well with contractions that it dawned on me that I’ve felt these feelings before! My period pains were literally contraction/labour pains - they even used to come in waves every couple of mins also! And like u say, I’m also disappointed in myself / family that I never went to a professional as it deffo wasn’t normal.

I’m not diagnosed with anything and I don’t suffer as much since having my children but am finding this thread an interesting read as a lot of symptoms I have resonated with at some stage x

 

[Bgr101]

Could have written this myself. My teenage years were horrific with period pains. I would have to take that 1st day off school due to intense pain and throwing up. Wasn’t until I had my first baby and midwife said I was coping so well with contractions that it dawned on me that I’ve felt these feelings before! My period pains were literally contraction/labour pains - they even used to come in waves every couple of mins also! And like u say, I’m also disappointed in myself / family that I never went to a professional as it deffo wasn’t normal.

I’m not diagnosed with anything and I don’t suffer as much since having my children but am finding this thread an interesting read as a lot of symptoms I have resonated with at some stage x

Im so glad u have been able to have kids. Sadly not for me. We are all on our own journeys, good we can share experiences here.

 

[Jdottt13]

Im so glad u have been able to have kids. Sadly not for me. We are all on our own journeys, good we can share experiences here.

so sorry to hear that, I hope my post wasn’t insensitive in any way. Xx

 

[Bgr101]

so sorry to hear that, I hope my post wasn’t insensitive in any way. Xx

No no not at all . Good to hear all sorts of different experiences.

 

[Elisha97]

I posted in here earlier. I finally got my appointment and saw a gyno doctor who confirmed she’s sure I have endo and my womb is tilted back which she suspects is from scarring! They’re sending me to pain management to find pain relief that actually works, doing a scan to check me over and I’m on the waiting list for an op now. They’ve also suggested I go onto the coil. I wish I’d pushed for this years ago but it feels so good to be listened to and for there to be things I can try

 

[Bgr101]

I posted in here earlier. I finally got my appointment and saw a gyno doctor who confirmed she’s sure I have endo and my womb is tilted back which she suspects is from scarring! They’re sending me to pain management to find pain relief that actually works, doing a scan to check me over and I’m on the waiting list for an op now. They’ve also suggested I go onto the coil. I wish I’d pushed for this years ago but it feels so good to be listened to and for there to be things I can try

How did she confirm it did they do an MRI?

 

[Elisha97]

How did she confirm it did they do an MRI?

No, I’m booked in for one. She thinks she can feel scar tissue and my womb is tilted back as if the scar tissue has secured it that way as well apparently

 

[justheretoread99]

Has anyone ever gone private for a laparoscopy? (UK)
If so how much did it cost and was the process straightforward?

Saw a male gynaecologist yesterday who reduced me to tears (not the first time) and laughed at me when I explained my symptoms and wanted to be investigated for endo. So tired of the NHS and being passed from pillar to post for the past 13 years

 

[Yorkshirewife]

Has anyone ever gone private for a laparoscopy? (UK)
If so how much did it cost and was the process straightforward?

Saw a male gynaecologist yesterday who reduced me to tears (not the first time) and laughed at me when I explained my symptoms and wanted to be investigated for endo. So tired of the NHS and being passed from pillar to post for the past 13 years

That is absolutely bleeping disgusting. I'm so sorry you were seen by an absolute idiot. I've just gone private with my excision surgery, but through my hubby's private health care. But looking at the prices he wrote that the consultation was £200 and the excision would have been £720 so I think a diagnostic laparoscopy would be a bit less. Hopefully that helps a little bit was so straightforward tho and so quick xx

 

[IndominusRex]

I’ve now had 2 private ones but with health insurance. You have to factor in several appointments, scans etc then the actual surgery fees plus anaesthetist fees. It varies from place to place, my first one would have been a few thousand because of where it was done but latest I think was about 2k all in. Hope that’s helpful.

 

[Yorkshirewife]

I’ve now had 2 private ones but with health insurance. You have to factor in several appointments, scans etc then the actual surgery fees plus anaesthetist fees. It varies from place to place, my first one would have been a few thousand because of where it was done but latest I think was about 2k all in. Hope that’s helpful.

Yeah I think mine would have been about £1.5k/2k ish all in. Forgot about anaesthetist fees

 

[Jen]

Has anyone ever gone private for a laparoscopy? (UK)
If so how much did it cost and was the process straightforward?

Saw a male gynaecologist yesterday who reduced me to tears (not the first time) and laughed at me when I explained my symptoms and wanted to be investigated for endo. So tired of the NHS and being passed from pillar to post for the past 13 years

I was in exactly the same position as you and I know how hard it is. Unfortunately some gynecologists' behaviour is shocking! I was getting so desperate for answers that in the end I decided to use my savings to pay for surgery which I had 2 weeks ago. It wasn't a decision I took lightly, but I have no regrets.

So my consultant charged £200 for my initial consultation where he read my notes, examined me, then agreed to the surgery and all consent paperwork etc was signed. I then paid for a 'Total Care Package' which was roughly £4500 and this included literally everything. All of my pre-op appointments - including meeting my anesthetist, having multiple blood tests, an ECG (pre-existing heart condition) and Covid swabs; the surgery itself, a private room and my own nurse who stayed with me throughout and enough surgical dressings and pain to last me a week; then all follow up appointments - the first of which I've already had with a nurse to check my wounds are healing well, and then in a couple of weeks I'll be seeing my consultant to discuss my results. From my first appointment to surgery was just 5 weeks.

Ultimately only you can make the decision whether or not to go privately and obviously everyone's experiences are different and that's just mine. I hope you get the answers you're looking for x

 

[Bgr101]

I was in exactly the same position as you and I know how hard it is. Unfortunately some gynecologists' behaviour is shocking! I was getting so desperate for answers that in the end I decided to use my savings to pay for surgery which I had 2 weeks ago. It wasn't a decision I took lightly, but I have no regrets.

So my consultant charged £200 for my initial consultation where he read my notes, examined me, then agreed to the surgery and all consent paperwork etc was signed. I then paid for a 'Total Care Package' which was roughly £4500 and this included literally everything. All of my pre-op appointments - including meeting my anesthetist, having multiple blood tests, an ECG (pre-existing heart condition) and Covid swabs; the surgery itself, a private room and my own nurse who stayed with me throughout and enough surgical dressings and pain to last me a week; then all follow up appointments - the first of which I've already had with a nurse to check my wounds are healing well, and then in a couple of weeks I'll be seeing my consultant to discuss my results. From my first appointment to surgery was just 5 weeks.

Ultimately only you can make the decision whether or not to go privately and obviously everyone's experiences are different and that's just mine. I hope you get the answers you're looking for x

Can i ask what symptoms you had that made you consider surgery? Thank you

 

[Jen]

Can i ask what symptoms you had that made you consider surgery? Thank you

Of course. So initially it was very heavy and painful periods. To the point that I was bedbound for the first few days of my period, would often collapse in agony and suffered from horrific sickness and diarrhea during my period. I saw my GP repeatedly as a teen but they simply dismissed it, so I felt like I had no choice but to learn to live my life around my period. But then a couple of years ago I began bleeding and having period-like cramps from mid-cycle onwards which was when I went to my new GP and basically refused to leave without a referral. I then went through every test imaginable, bouncing between different useless gynecologists', before eventually being told that I had kissing ovaries which suggested advanced endometriosis. Unfortunately Covid happened and everything ground to a halt, but then earlier this year I began to develop nerve pain in my legs and could barely stand let alone walk during my period and I knew that something had to be done. Whilst I don't yet know the ins and outs of what was done during my surgery, my consultant did tell me afterwards that they were able to remove some endo and the adhesions on my ovaries, which although it won't cure me, may alleviate some symptoms. I was terrified of having an operation, but it felt like the only hope I had and ultimately I finally have a diagnosis.

 

[Bgr101]

Of course. So initially it was very heavy and painful periods. To the point that I was bedbound for the first few days of my period, would often collapse in agony and suffered from horrific sickness and diarrhea during my period. I saw my GP repeatedly as a teen but they simply dismissed it, so I felt like I had no choice but to learn to live my life around my period. But then a couple of years ago I began bleeding and having period-like cramps from mid-cycle onwards which was when I went to my new GP and basically refused to leave without a referral. I then went through every test imaginable, bouncing between different useless gynecologists', before eventually being told that I had kissing ovaries which suggested advanced endometriosis. Unfortunately Covid happened and everything ground to a halt, but then earlier this year I began to develop nerve pain in my legs and could barely stand let alone walk during my period and I knew that something had to be done. Whilst I don't yet know the ins and outs of what was done during my surgery, my consultant did tell me afterwards that they were able to remove some endo and the adhesions on my ovaries, which although it won't cure me, may alleviate some symptoms. I was terrified of having an operation, but it felt like the only hope I had and ultimately I finally have a diagnosis.

Thanks for this. Im glad you got the help you needed. Such a pity you had to pay for it all yourself x

 

[justheretoread99]

Thanks all @Yorkshirewife @IndominusRex @Jen
Going to do some research on private clinics. I’m expecting thousands to pay but I can’t bare to see another NHS “gynaecologist”

 

[Bgr101]

Thanks all @Yorkshirewife @IndominusRex @Jen
Going to do some research on private clinics. I’m expecting thousands to pay but I can’t bare to see another NHS “gynaecologist”

I paid to see a private gynaecologist before who i knew specialised in vaginismus and vuvlodynia which was what i wanted help with and she was able to give me medication and i can just get it now from the NHS directly. It could be worth paying the initial fee getting a diagnosis and then being referred back to the nhs to a.specialist. just a thought.

 

[bringingdownthebs]

Has anyone ever gone private for a laparoscopy? (UK)
If so how much did it cost and was the process straightforward?

Saw a male gynaecologist yesterday who reduced me to tears (not the first time) and laughed at me when I explained my symptoms and wanted to be investigated for endo. So tired of the NHS and being passed from pillar to post for the past 13 years

Yes - mine was about £5000 in total 3 years ago. Was so worth it though! Managed to conceive a year later as well!

 

[justheretoread99]

I paid to see a private gynaecologist before who i knew specialised in vaginismus and vuvlodynia which was what i wanted help with and she was able to give me medication and i can just get it now from the NHS directly. It could be worth paying the initial fee getting a diagnosis and then being referred back to the nhs to a.specialist. just a thought.

Absolutely. I will do, thank you! X

Yes - mine was about £5000 in total 3 years ago. Was so worth it though! Managed to conceive a year later as well!

That’s amazing, congratulations! Although none of us should have to pay for this.

 

[Bgr101]

I paid to see a private gynaecologist before who i knew specialised in vaginismus and vuvlodynia which was what i wanted help with and she was able to give me medication and i can just get it now from the NHS directly. It could be worth paying the initial fee getting a diagnosis and then being referred back to the nhs to a.specialist. just a thought.

Also you can request a female if you dont feel you are getting the right response from a male. X