Uncertainty re: diagnosis.: Hi everyone, I... - Endometriosis UK

Endometriosis UK

63,764 members49,192 posts

Uncertainty re: diagnosis.

misscharlie profile image
34 Replies

Hi everyone, I posted on here awhile ago and now I have a date for my first laparoscopy (12/04). I had an MRI scan in Jan and the gynaecologist wrote to me reporting she couldn't detect any significant signs of endo on the scan though a laparoscopy would be needed to confirm this. I have researched her and it seems she doesn't specialise in endometriosis - looking through the posts it seems that having a gynae specialising in endo is a great asset. My symptoms have been more pronounced for the last 12 months; heavy bleeding, irregular periods, cramping, throbbing pain in my lower right hand side, lower back pain etc. I'm concerned that if she doesn't detect/remove any adhesions during the procedure then where do I go from there. Do I continue to suffer with no diagnosis to attribute it to and no plan of action. I'm feeling desperate and terribly isolated. I am trying to pace myself and take one step at a time though I cannot help but think about the future! I am 36 and would like to try for a child within the next few years. I have been symptomatic since the age of 14 though just assumed this was normal until the throbbing in on my lower RHS started - this prompted me to see my GP. Sorry for the moan! I know you are all suffering in one way or another and I appreciate the time you take to read this. Many thanks x

34 Replies
Gemma1986 profile image
Gemma1986

Hi! I wouldn’t worry too much that she doesn’t specialise in endo, I had the same gynae for 2 years then she cancelled my op last minute, so I got a cancellation from a completely new gynae and he didn’t specialise in it and didn’t know my history at all but did a really good job! I wouldn’t worry too much about the MRI, the scans I had only picked up that I had a cyst on my ovary then when they operated it was stage 4 endo, adhesions everywhere, endo in bladder Fallopian tubes blocked and all sorts. I hope this helps xxxx

misscharlie profile image
misscharlie in reply to Gemma1986

Thanks for your reply Gemma, yes it does help massively. I'll just have to see what happens! Was that your first laparoscopy? x

Gemma1986 profile image
Gemma1986 in reply to misscharlie

Yeah it was my first one! Had it in July 2018! I was shocked it was such a mess in there lol, scans aren’t always 100% accurate xxx

misscharlie profile image
misscharlie in reply to Gemma1986

So sorry to hear that, how are you doing now? Better I hope after having had all the adhesions removed! x

Gemma1986 profile image
Gemma1986 in reply to misscharlie

It’s been this best thing I’ve ever done still pain free! It’s completely given me back quality of life xxx

misscharlie profile image
misscharlie in reply to Gemma1986

Fantastic, so good to hear that! x

StefaniaJW profile image
StefaniaJW

I'm going to tell you something that might scare you but which is important.

Unless an experienced endo surgeon performs surgery on you, the lap you undergo might be completely pointless because they are not trained to recognise all adhesions and deep-infiltrating endo, so even though it might go well for those who only have ovarian chocolate cysts, if your situation is more complex you will not feel better after surgery or even worse. PLEASE, PLEASE only seek an experienced endo surgeon!!

If you need names of endo surgeons in the UK please private message me with your location and I'll give you contact info.

misscharlie profile image
misscharlie in reply to StefaniaJW

Thank you for your reply though I have a date for a laparoscopy now. It’s on the NHS. I accepted the third date they gave me and I believe, under NHS protocol, if I cancel the laparoscopy (to seek a gynae specialising in endometriosis) then I will be taken off the list. The other option is I go can private. Whilst the cost is prohibitive it may be an option I’ll have to think seriously about. I’m in Nottinghamshire x

Cynthiaortg profile image
Cynthiaortg in reply to misscharlie

Hi, i did surgery with a gyn with no experience and worst experience ever now i need a second lap, i do recomend to go with someone that really nows endometriosis , someone that does excision not ablation, also endo is very difficult and if not treat the right way. There is a list of doctors look for nancy nook on facebook theres is so much info and a list of specialist around the world.

misscharlie profile image
misscharlie in reply to Cynthiaortg

Thank you x

Madula profile image
Madula in reply to StefaniaJW

Hi StefaniaJW, how do you have all the contact information for endo surgeons? It would be useful for the rest of us if you would share this so we can look it up. I for example, am on the waiting list at Basingstoke hospital in Hampshire, I'm not sure who my surgeon will be so it would be really appreciated if you could private message where i can find the best person in my area. We all appreciate your help. Thanks.

Nightingale89 profile image
Nightingale89 in reply to StefaniaJW

StefaniaJW, I would be interested in any contact info you have for surgeons in Inverness where I live? Please private message me. I was informed by my surgeon that if she finds endo on my bowel she will need to refer me on to a specialist in that sort of surgery in Aberdeen. Many Thanks!

KGme profile image
KGme in reply to StefaniaJW

Hi StefaniaJW I’m in Stnstead Abbott’s in Hertfordshire and I’m currently awaiting my 1st gynae appointment then I’m expecting an mri md lap to follow. I have read before that a specialist gynae is important, do you have any details of any specialists in my area? I’d appreciate it so much xx

StefaniaJW profile image
StefaniaJW in reply to KGme

I was told I cannot post names of doctors here or I'll get banned from the forum. Message me privately

misscharlie profile image
misscharlie

Thank you Lindle. This is all rather daunting, not sure what to do x

misscharlie profile image
misscharlie

Thank you for the link. I will give the hospital a call in the morning to clarify x

Peebles2sarah profile image
Peebles2sarah

If she doesn’t find anything, you need to ask her what else she thinks it might be. As much as finding no endo might be a disappointment in some ways, it can also be good as you can rule it out. If she doesn’t have any advice on what it could possibly be then use that to ask your family doctor to refer you to another gyno or endo specialist.

misscharlie profile image
misscharlie in reply to Peebles2sarah

Thank you. Sometimes I wonder if I am imagining all of this but then I remind myself the pain and the irregularly of bleeding is very real. I am so frustrated with myself!!! X

Peebles2sarah profile image
Peebles2sarah in reply to misscharlie

It’s real and valid!! Don’t worry about that part. Just be firm and tell your gyno that if there isn’t endo, she has to figure out what is wrong. It’s her job so don’t feel like you’re burdening her :) good luck!! Xxx

misscharlie profile image
misscharlie in reply to Peebles2sarah

Thank you! x

lslo23 profile image
lslo23

I have recently just gone back to a gynaecologist that specialises in endo as the first gynae I saw only removed the endo ‘superficially’ through being burnt off rather than excision. Symptoms came back within two months and I’m back on the waiting list for another laparoscopy.

From my recent experience I would say seeing an endo specialist is paramount to making sure you get the best treatment and making sure it gets removed properly. I wish I knew this last year!

I really hope it gets sorted for you! Xxx

misscharlie profile image
misscharlie in reply to lslo23

Thank you x

hannadarb profile image
hannadarb

Hi misscharlie

Have whatever it takes to get your diagnosis, I had to go through so much to get my diagnosis, insisting on having more operations to get that diagnosis. As GPS and gynes said I didn't have endo.

My main advice would be listen to your instincts, we know our own bodies. It took me 15-20 years to learn that, as it took me 21 years( of pain every day) to get my diary. Xx

misscharlie profile image
misscharlie in reply to hannadarb

Thank you, the general consensus seems to be to be find an endometriosis specialist x

hannadarb profile image
hannadarb

Sorry diagnosis not diary

Sunflower1968 profile image
Sunflower1968

Hi I was advised the first lap is often to identify the severity of your condition and then cases are transferred to specialists. So I had my first lap and whilst under had an ovary removed and a cysts too but whilst under what should have been a 30 mins procedure became over 3 hours due to a significant bleed. I woke up with so much pain and my gynaecologist is the head of gynaecology at two hospitals and a private endo specialist and a very well respected gynaecologist.

She advised me I had “scared her” her words and I needed a blood transfusion due to the blood. I have not had further surgery as she says it’s too much of mess. None of my Endometriosis showed up on an mri. I was worse after the surgery so my advice is every case is unique and like the ladies are advising you please do your research. Remember it is your body you have the right to choose what is right for you. I would not rush into anything until you feel confident you are under the right surgeon. I know how awful living with Endometriosis is I have stage 4/severe and there are many success stories with surgery but just be sure you are well informed with what is right for you.

Ablation has worked for some and not others. I know of cases who have had Endometriosis surgically removed and it has grown back. I am not trying to scare you at all I just feel we all want to be out of pain and leading a normal life and can often trust others with surgery before we are fully Informed.

As you can see in your replies it’s a mixed bag of positive & negative experiences.

I am no better off since my surgery. I truly hope you receive the care and outcome you need and take care of yourself.

misscharlie profile image
misscharlie in reply to Sunflower1968

Thank you and so sorry to hear you have suffered so dreadfully with it all. From the research I have done online it seems my gynaecologist does not specilise exclusively in endometriosis so I am a little unsure as to whether I should go ahead with the lap next Friday or not. Another lady on this post kindly sent me the link to a private consultant so it might be worth me trying to get a private consultation with him, although unlikely to get it before next week x

Sunflower1968 profile image
Sunflower1968

I agree with all you have detailed, the point I was trying to make is my gynaecologist does specialise in Endometriosis and Unfortunately it has made very little difference to my outcome as my Endometriosis is everywhere.

I saw her privately first and then had my surgery on the nhs.

We are all unique so all I was trying to say was carry out your research and do not make hasty decisions based on other people’s opinions.

TiffJadeR profile image
TiffJadeR

My first consultant had a special interest in laparoscopic surgery however when I arrived on the day of surgery it was done by someone that does not have either that or endo listed. My new consultant is refusing another lap and actually now refusing to treat me at all. Do you have any advice? I feel like I'm about to go into a very deep state of depression due to my treatment by NHS.

misscharlie profile image
misscharlie in reply to TiffJadeR

Have you thought about seeking a second opinion privately? I know the cost is a factor but I am thinking for myself it will be money very well spent x

TiffJadeR profile image
TiffJadeR in reply to misscharlie

It's definitely a possibility later down the line just need to keep saving. In the meantime I will keep standing my ground and being a pain - seems to be the only way to get things done.

Hope things improve for you soon.

Xx

StefaniaJW profile image
StefaniaJW in reply to TiffJadeR

Come to my country to get treated. Choosing one surgeon and then ending up with a different one is preposterous.

StefaniaJW profile image
StefaniaJW

I'm Italian so I have no idea about other UK excision surgeons. All the names I have are from the Nancy Nook group file.

misscharlie profile image
misscharlie

Hi again all, just want to update everyone re: my first laparoscopy, following my previous post. I had the lap this afternoon and am currently wide awake at 00.48!!! I expect the fatigue will catch up with me tomorrow! I was discharged in the evening. I had a hysterscopy too and was found to have adhesions attached to my bowel and a polyp. All have been removed and sent for analysis as per protocol. Surgery lasted approx 2 hours. I was not alert enough to absorb all of the gynae’s findings, however, I hope to receive a letter detailing the report shortly or perhaps I should request my notes. I have been put on the pill as opposed the Mirena Coil. Whilst I feel relieved to have determined the cause of my pain, I must say it has been overwhelming and draining mentally and physically, though I know this was to be expected!! Thank you to everyone for their kind, reassuring words prior to surgery and for sharing your experiences with me! All the very best xxx

You may also like...