Catness

My advice would be to pay to see an endo specialist privately which is around £150-180 for an initial consultation. Yes it is a huge amount of money however, in my experience of seeing a general gynae compared to a specialist consultant the two dont compare to one another. If

You do opt to pay to see someone privately chances are they will be able to see you within the month and they *might* be able to refer you back into the NHS as part of their practice (I have been lucky enough to do this a few times). I just started by googling endo specialists in my area and went from there.

I have heard of cases where endo has been missed the first or even the second times so going directly to a very experienced specialist would be what I do. Best of luck and sending lots of support your way. Xxx

Penelopeel

That’s awful for you! Yes it is very possible the gynae missed Endo. My specialist showed me photos from my laparoscopy and said a general gynae would have missed these lesions. So if you ever have another one go to an endometriosis specialist. Why don’t you ask your Gp if you can try a progesterone only tablet . Eg medroxy progesterone acetate ( provera 10mg ) take it daily. If you can afford it you could also try Prometrium 300 mg daily. That one is bioidentical progesterone and it’s only side effect is to make you sleep well so take at night. If the progesterone helps the pain then that’s a huge indication you have endometriosis. Those meds are safe and any Gp can give it to you. Worth trying and no harm will be done. Let me know how you get on. Penny

Lulububs

Hey

Sorry read ur post and it sound exactly like me, everyone has been 99.9% sure ive had endo.

Pain, pain during sex for last two years. Periods got worse.

Had a lap by a top gynae into endo and nothing he said healthiest inside he had seen on a 43 year old but sent me to his physio.

So i saw a pelvic foor physio and she realised i had a tiny enterocele really high up and that what pain was... aparently the small ones are

More painful as ur muscles are working harder to keep it in and up whereas if u just prolapse it just all fall out.

So i have to do pelvic floor exercises and go to her for internal physio to relax my muscles aswell since seeing her which is now 6

Months my periods are better, my pain is nearly gone, it flares up. I havent had sex yet but im working up to it.

So what im basically saying is it may not b endo us women we can have a complex thing goin on down there...it could b something that can b helped easily

dawntildusk

Unfortunately the answer is yes it can be missed. I had a large endonetrioma which was picked up on a scan and had my first lap to remove under general gynae. Was told it was all clear, nothing there, discharged from their care!?! It was a very confusing and distressing time. Obviously my symptoms persisted as they hadnt done anything so thats when i started to research and came across bsge centres. i went back to my gp and he referred my to a consultant at one of these (turned out the hospital i had lap with had one). Within a few months i had an mri which confirmed the endometrioma was still there. In fact at that time i think they said i had 3. To cut a long story short ive just had a hysterectomy for stage 4 endo. Keep a diary of your symptoms and always take someone with you to appointments. If you can afford a private consultation it would definately be money well spent and will cut down your waiting time hugely. Otherwise go back to your gp and ask what else are they going to do as your lap was clear and your symptoms will persist. Good luck x

Hidden

Pain during sex can also come from muscle pain. I've had painful sex for the last 4 years and when my lap came back negative I started to look into physical therapy to try and solve it. There are often a lot of pressure points which need 'massaging' and can help loads with painful sex, as a lot of times you can think the pain will be worse which makes it happen, if that makes sense. Plus, if none of that works, then you can go back to the gynaeo and tell her that you've ruled that out/are trying it, but I'm in the exact same position, and I've been dilating and doing PT for about 2 years and still in some pain but nowhere near what it was. Hope that helps some, painful sex sucks! x

Lulububs in reply to Hidden

Hey

Im sorry to reply to u but u sound exactly like me.

I have had such pain for about 2 years sex wise also period.

Had a lap as they were sure i had endo but nothing.

I was sent to a pelvic floor physio she is good but as it nhs it once a month and not much time.

Can you tell me more about u and ur symtoms and how u have helped urself?

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Hidden in reply to Lulububs

Penetration was literally impossible so I got treated for vaginismus, which I've been using dilators for for about 2 years now. However because I was diagnosed with stress&panic as a child, years of stress and taking it all to my pelvic floor muscles had done a lot of damage and now my muscles are in a permanent state of tightness.

The pain is mostly pressure points down the left and right hand sides so I bought a therawand and still use the dilators to try and release the pressure points as well as reverse kegels, and just taking time in the day to remember to relax them because I'm so used to them being squeezed tight.

I never considered a physiotherapist on the NHS but I'm going to see what I can do myself first bc I've had a lot of time off work for appointments, but the work I've done myself is getting there slowly because compared to this time last year, I can actually have sex as opposed to penetration being absolutely impossible. The pain is still there down the inside but once you've identified the pressure points you can work on relaxing them which feels great (I once hit one that literally relaxed all the muscles down the right hand side which was bizarre!)

Good luck with it all, drop me a message if you ever wanna rant about it ! x

(Edit: My womb is also tilted which I was told plays a part in this, so could be something else to look into)

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Lulububs in reply to Hidden

Well i seemed to fall on my feet with the pelvic floor physio i was sent to acupunture in a clinic and she was one that said “i think u should see our pf physio” i didnt even know they exist?

I know there is quite a few well reknowned ones about now as ive done my homework.

I have pressure release internal and external. Do u get muscle pain in ur groin outside and sometimes backache on outside if ur extra tight?

Ive got problem of being tight but also having to stay tightish to keep enterocele in place as if i slack it will full prolapse!

So i have to do release and tightening exercises.

So loads of heavy slow breathing from the stomach and releasing then after some tightening exercises( pulling up) then relaxing again.

I have not had sex for 8 months !! My husbands understanding but u know i want to b back to normal but as soon as we try it get pain on left side , it get so bad it the actual pulling out that kills me( tmi sorry)

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Hidden in reply to Lulububs

Yeah I totally get that, it's like the pain inside radiates up my right side and when I hit the pressure point inside the pain just melts away for a little bit!

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Zoehman82

I experience painful sex too. It can vary depending on where I am in my cycle.

A week after my period is ok, then it becomes painful until I finish my next cycle.

I had a small amount of endo removed from my right ovary in August during a diagnostic lap. I had very specific right sided pain in that area and this has now gone.

I had an MRI that showed adeno. My consultant said if I still had pain after my surgery it was more likely to be the adeno shown on MRI causing my more general pain.

I suffer with lower back pain, sciatic pain (towards and during my period) bloating, terrible cramps, headaches and fatigue.

I experience shooting/stabbing pains up my bottom and vagina, it can make it really painful to sit and even stand.

Adeno can be difficult to diagnose. I am fortunate to have seen a specialist in endo but through his routine NHS clinic at the hospital. To have had an MRI and seeing a consultant that really knows his stuff.

So even if you don’t have endo, adeno is another possibility.

I would ask for a second opinion. The first gynae I saw insisted I had a mirena coil fitted. The guy never examined me, didn’t ask any questions and showed little interest in what I wanted to tell him.

I suffered with the coil for 7 months went to my gp a few times with the increasing levels of pain in my back etc.

She was great and gave me various pain meds and sent me For an X-ray on my back, did my bloods and then was happy to refer me back to gynae as he had signed me off the day he fitted my coil.

I asked to be referred to someone different for a second opinion. Best thing I ever did.

My second gynae removed my coil the first day I saw him, examined me asked so many questions about my symptoms and pain and how it affected my life. He put me on the list for a diagnostic lap, sent me for an MRI and an Ultrasound, full bloods and started me on Decapeptyl whilst I waited. He said if my pain was gynae related it should start to ease my symptoms whilst I waited.

I am not saying you have adeno or endo but it is easily missed and not diagnosed properly so ask for a second opinion. Good luck with getting some answers x

Aliceemilyjane

Thank you all for your help! I'm going to wait until I'm fully healed from the op then head back to the doctors to try and see a specialist privately (not sure how it works switching from the NHS!).

In the mean time i'm going to try changing my diet and seeing if that helps, whilst keeping a diary off all my symptoms. Thank you all again