How long did it take for your laparoscopy... - Endometriosis UK

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How long did it take for your laparoscopy/diagnosis of endometriosis?

Elm98 profile image
13 Replies

Hi there, I’m new to the community and have joined because although I haven’t got an official diagnosis of endometriosis, I have been suffering with nearly every symptom of endometriosis since I started my periods 11years ago (I’m 19 now) and myself and my GP are 99% sure it is endo, yet when I go to see the gynaecologist she refuses to agree to a laparoscopy and says I just have IBS and bad periods and sticks me on a new hormone tablet every time, it’s getting me down because it seems to be at an all time worst and I can’t even poop without agonising pelvic pain and spotting. It makes me want to give up on trying to find a solution when the doctor won’t take me seriously.

Just wondering how long did it take for a doctor to take you seriously and do a laparoscopy and get your diagnosis?

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Elm98 profile image
Elm98
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13 Replies
Amyjane88 profile image
Amyjane88

Hi hun sorry your having a hard time getting to the bottom of your pain. I would speak to g.p and ask to see a different gynecologist for second opinion. Xx

Abi_97 profile image
Abi_97

I'm sorry you are struggling 😭 If your doctor thinks its endo can they request a lap or send a letter to your gynae 🤔 I aas quite lucky my doc thought I had endo my first gynae though thought I had endo but I was too young for a lap so he put me on the combined pill for 6 months (that made me 10x worse) as soon as I got called back to the hostipal my second gynae was like we are sending you for a lap she didnt even want to know about my hormonal treatment experience 😂 3-4weeks after there was a cancellation and I had my lap but the couldnt remove any endo so I'm seeing a specialist on thursday should get my mri results as well 😮 Keep visitng your doctor and make sure they know you are fed up 😮Is it the combined pill you are on? Xx

Elm98 profile image
Elm98 in reply to Abi_97

Hi, yeah some people get their diagnosis’s quicker because some doctors seemed to be more clued up than others where as some always think they know best.

No it’s not the combined pill...I’ve been on a few different combined pills and they were hell for me, I’m now on medroxyprogesterone but have been bleeding since the 14th of December and pain hasn’t subsided even with painkillers.

Good luck with your mri, hope everything goes as well as it can do. Xxx

Abi_97 profile image
Abi_97 in reply to Elm98

I hope your gynae will understand soon 😮 Definetly keep bugging your doctor they might then send a letter to your gynae 😮 Oh no that sounds awful 😭 Thank you xxx

Nicjane profile image
Nicjane

Hello! Wow I thought I wrote a post in my sleep our stories are identical. Im 19 still un diagnosed. I also find it super hard to go toilet it may aswell be my living room at this point. I'm not goiny to talk to much about my useless gyne she was pretty much a robot and refused everything. However due to a mistake I saw a differwnt gyne in october. The past year I been experiencing crazy hip, leg pain on my right side about 4/5 days a week also lately roght stomacj pain I wonder if its due to consitpation? so it was my final straw. I gotvan emergency appointment becuase I opened up and said it waa affecting my mental health. So they took me ao much more seriously I wish I mentioned it before. My appointment was 2nd of October 2017 . The gyne was amazing really warm, sympathetic and helpful. My pre op was 10th of January. My lap is 9th of March (funnily enough on a university deadline) i do need to have more blood tests about a week before hand. Was in absolute agony with ny right side last night I wonder if you experienced simular? Keep pushing get on the doctors nerves thats what I did , good luck and if you have any questions I be happy to talk. Being undiagnoised is hard becuase you just want proof of something but every person with endo have been undiagnoised at some point. Sorry if my spelling/grammer is off I just woke up and knew I had to reply to you!

Good luck and I hope you have a pain free day xx

Elm98 profile image
Elm98 in reply to Nicjane

Oh I’m really glad you’ve managed to get a lap booked in; hopefully it’s the first step to getting things sorted for yourself.

I think maybe it’s time for me to get an emergency appointment with a different gynaecologist just to see if they will help me anymore than th usual. Xx

Dee11 profile image
Dee11

Hey, sorry you’re having such a hard time. It’s so difficult getting taken seriously by some Doctors if you’re young. It’s the most frustrating thing out.

Personally I started going to a gp about my issues when I was about 15. No consultant would really see me or take me seriously for years and said they thought I just wanted time off school and uni. When I was 21 a consultant did say he thought it was Endo but refused to do a laparoscopy to check because of my age so I was told to start taking my pill continuously. It wasn’t until I was 24 they agreed to do a lap where I was then told no Endo was found. I’m 25 now and seeing another consultant who believes it was actually just missed.

It’s really your luck at times how quickly you can get seen unfortunately. Which is so so so wrong. I know some girls who were sent to a gynae and had a lap almost immediately and others who waited even longer than I did. It sounds like your GP is good though, which is such a good sign. Can he/she refer you to a different gynae consultant? Maybe look at some in your area and see who specialises in Endo and ask to be referred to them? x

Elm98 profile image
Elm98 in reply to Dee11

It’s unbelievable how little understanding there is around women with ends or even ending symptoms.

I’ve had so many doctors just tell me I’m just overreacting and that it’s a normal woman thing; but on I keep fighting!

I may actually look into looking for specialists in my area just to attempt to get the ball rolling; at this point I’m evening considering paying to go private. Xx

Dee11 profile image
Dee11 in reply to Elm98

I paid to go for a private consultation with a gynae I had picked because I was getting absolutely nowhere. I can honestly say it was the best choice I made and was worth every penny.

I got even luckier that the consultant is also working on the NHS and asked me if I wanted to be referred to him there to save me the money of paying for the op myself. It's obviously not going to happen as quickly this way but I'm willing to wait in order to put myself under less stress financially (I'm on a temp job so every little helps!). Yours might give you that option too if you go ahead with it :) xx

skybluepink profile image
skybluepink in reply to Dee11

I didn't think this happens nowise Specialists seen their direction was ignored re utis & spinal spasticity - expensive MRI[ 20 A&E refusing to TEST .

Obviously my age 71 is being used to discriminate & ration because it is men making the rules oh not another METO situation Otherwise does it make sense to send those who need specialism & research & antibiotics targeted , back to Primary Care when Dr have said originally 1980s not educated to Research & Disability [ NHS refusing to recognise Disability spina bifida in online record] suspect underlies everything re: poor immunity - hormonal imbalances Not allowing Change or Challenge .

Should I have been sent back to be abused by no research or reason in Primary Care i.e. having time wasted & conditions that could have been reversed made untreatable.

Allowing the Bed blocker term when have known Social Services maladministrated diverting the funds by their employers.Sepsis is an emergency issue. Why allow local assistance for Cardio-pulmonary to be removed by their employers as well as the Funds ??!! With a Hippocratic oath this would never have happened?

I had to pay to get a smear when pelvic exam refused again re discharge, cysts when hard lumps suspect related to lymph nodes & problems getting antibiotics for utis .The Endometrius was found to be 9mm thick found privates smear had to travel 200miles for & It took till Dec 2017 to do hysterscopy Biopsy forgetting about lymph/uti[ 3 weekly ] issue as there were also cysts on vulva. Was I sent a written record? & Follow up .No ??!!!

The former GP p/t had agreed to Fast Track & then spent nearly every available appt following up till Dec even when double .I then decided to change AGAIN as all other p/t GP s deferred to least experienced who were changing what we were agreeing to on hidden online system behind my back .

Had asked for f/t.on arrival as my hospital appts had not been transferred when moved home 5yrs prior casing change of surgery over and over again as do not feel safe.My latest surgery of 2 weeks say have nothing to do with the hospitals??!

Even so they are wasting the Funds as got appt cancelled 3x brought forward There were 4 p/t Medics bullying refusing to address problems re need for laser /cyro for cysts [ sepsis?}

They appeared to be teaching Discrimination? As why when left felt so in limbo so very upset ??! As heart failure too with dyspnoea was on mobility scooter carried in WAV with no Carer classed as Vulnerable for them to abuse? .Surely this is illegal against Equalities & NHS Constitution .Why aren't a few heads rolling .The Specialists would never allowed this carry on where are they? In private sector?

Every time there is a Cut they Cut me form Secondary Sector then the Primary Care blames saying not taught about [disability spina bifida - not recognised by NHS even when caused cardiac arrest .It could also cause Sepsis as my spinal spasms relate .But because Staff are on Contracts & Remits reason , ethics & appropriate behaviour has gone out of the window ,Does decentralised Government care no it allows to happen by not checking the Treasury understands Maths & how to fund??!

From first trip to the GP with period pain to first surgery and diagnosis - 23 years.

Elm98 profile image
Elm98 in reply to

Oh goodness that is so long, I’m really sorry to hear how long it took. Xx

Honey89 profile image
Honey89

Unfortunately womb pain/issues don’t get taken seriously at all if you’re under the age of 25 :(. I went when I was about 23 and they just put me on the pill, which to be fair did help for a year or two but then it all came back a lot worse so went back to my gp. I was one of the lucky ones who the doctor straight away said no that’s not right and i was seeing a gynocologist and having my diagnostic and removal of cyst op within five months. Unfortunately they didn’t do anything and I’ve been waiting for about a year since then to have the second op but that is just nhs waiting times. Basically I was just lucky that I was older so I was taken seriously so don’t give up. Your gp seems to be on your side so get them to refer you to a different gyno. You would think they would know better though! Good luck with everything and never give up.

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