I’m still waiting for my first lap to formally diagnose (hopefully treat). In pain almost daily but excruciating around ovulation/ menstruation.
Anyone else ever have moment of fear that this is all caused by something else that isn’t being investigated because your on the gynae mill?
When I raised this with the gynae their comment was around the fact that they can only diagnose gynae issues. I did have a CT by the colorectal unit to rule out bowel cancer, but what if they will only consider colorectal issues…..
Also - how do any of you cope with work and the pain/fatigue/brain fog….. my pain kicked in end of 2022, my ability to do my job, or even care about it has diminished ever since. The added stress of the burden I am to the team or the potential to lose my job is definitely not helping.
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I often have anxiety over this. Absolutely anything could be going on and the Gyne consultants have been wrong so many times before, it’s always a worry - so you aren’t alone! I haven’t had any digestive checks either because, my GP wouldn't refer me as I don’t meat the criteria. It’s stressful!
I’m waiting on MRI results which show an awful lot so that should put my mind at ease. Could be worth requesting one prior to the lap, they’ve done one to asses level of surgery required.
Regarding work, it’s worth having a conversation with your manager. I fortunately have someone with a wife that suffers so is thankfully quite understanding but, my moods/fatigue and pain absolutely do hinder me from giving 100%. I think we have to be less hard on ourselves, it’s so much to be going through without the worry about work. If you have disclosed your issues they have a responsibility to support you so that you feel more secure whilst you’re going through it -that might be a little hopeful of me!
Whilst not nice, it’s good to know the fears are shared. I’ve wondered about asking for an MRI and a nurse at my gp surgery thought it would make sense also. Might push this - thank you.
Re work - I have disclosed and I believe my immediate team to be sympathetic, but conscious that there is a limit to people’s patience sometimes and due to the nature of my job it will require me to be constantly advising of my condition as new people/projects come online all the time. I really miss the capable, motivated version of myself.
I was asked to speak to the business to educate more widely on the challenges of endo and chronic pain conditions which I realise is really great, but without a diagnosis it feels a little fraudulent and it can sometimes be quite emotive to explain the reality of this limbo and the constant effort to mask the experienced discomfort for a he sake of others. I am Hopeful that I will do this one day and I suspect it will be cathartic to share this when I am ready.
It’s just nice to know someone is in the same boat.
I would absolutely request the MRI, it benefits them to know what they’re likely to face when they do go for the lap. As well as assuring you that the diagnosis is justified.
I completely understand. I’m the same at the minute, motivation has completely left. Hyper focussed on the pain/damage going on with me, it’s extremely hard to switch off from it.
This limbo is something to be shared within itself. I know that without the formal diagnosis you don’t feel fully comfortable (I’ve been like that previously) but people should know how much is endured just reaching that place where a diagnosis can be provided! That would be extremely emotional for me also, I’ve cried many a time to my colleagues over disappointing appointments/when I’m struggling! This happens much too often lately.
Hopefully one day you will feel ready/comfortable sharing with your team, it would benefit you and them greatly to know what you and so many of us are going through 🤍
Hi there. Completely appreciate your concerns. I am also waiting for my first lap for suspected endo. I worry that they won’t find what they’re looking for and I will be back to square one waiting on a different referral list.
I am a staff nurse and I also worry about being such a burden to my team and feel so unreliable. I am currently on a phased return after being off for 3 weeks trying to manage my pain and I’m exhausted.
Thank you for sharing, it’s nice to feel I’m not alone in this.
Best wishes and hope you get some answers soon. Xx
I totally get this. I had my diagnostic laparoscopy and didn’t think they’d find anything. They found severe Endo which has spread throughout my abdomen, even my diaphragm. I was referred to a BSGE centre and I’m having an MRI with them on Friday. I’m still worried this will find something more sinister. I also had a colorectal CT a few years ago but I still worry.
I absolutely know how you feel and unfortunately my fears have come true after a negative laparoscopy! I sobbed and sobbed and sobbed! Not because I didn’t have endo but because I am now back to square one! But I can honestly say everyone around me is being amazing!
I am a primary school teacher and have been off work since October! I am living with constant chronic pain, fatigue, issues with bowels and bladder! I was adamant I had endo and actually my gp is still adamant I have it!! My body dramatically responded to the Prostap injection so he doesn’t understand why this is - when I say dramatically I mean I’ve gone from being pretty much bed bound to being able to do school runs etc with my tens machine and only having Tramadol later in the day!
Fortunately my headteacher is very understanding as both her sister and our old deputy have it but the guilt is still real! I am not happy how my gyne ended up speaking to me and think he had made his mind up before the op - after only being in op theatre for 16mins!!! So I’ve refused to see him for my follow up! I feel like it’s such a wasted procedure now! Defo push for an MRI (I haven’t had one) and ask if you can have an endo specialist perform your lap!
Obviously I know there is still a chance it might be something else but I’m currently fighting for the definitive diagnosis of it being endo or not! This ebook has been great and perhaps you could print questions off ready just in case -
Can I check how long you were on prostap before your surgery and how long a gap you were off prostap before your surgery? The reason I ask is that some surgeons put patients on prostap because it has the ability to shrink mild lesions on endometriosis to a point where it is not visible anymore. You need to be off prostap at least 6 months prior to surgery to allow mild lesions to recover/reform in order for the surgeon to see them during surgery otherwise when you have your operation they will not visible and you may get a negative result. Then the endometriosis will just return a few months later making the whole process pointless. Could this have happened to you? Some lesser qualified surgeons have been known to use prostap prior to surgery to make thier job easier if you know what I mean. I suggest you discuss this effect/possibility with your consultant. There is significant medical research out there on the effect of prostap and its use prior to surgery for you to look at to prove this. I certainly think if you have been off prostap for at least 9 months to a year, you should request a second opinion. I hope this helps and good luck in getting a diagnosis.
I have been on prostap for the last 4 months right up to my laparoscopy!! Since doing my research after I’ve found this could b the reason!! How ridiculous that you listen to experts and they do something like this?
I'm so sorry that this has happened to you. I can't believe that surgeons are still doing this!! Please get a second opinion. Research prostap and go armed with the effects of prostap and the fact you stayed on it right up until surgery, and this could have been the reason for a negative result. The good news is that the endo you had could have been mild enough so another dose of prostap would help you, but please come off it at least 6-9 months before any surgery in future. Prostap can be a life safer for some whom are on the waiting list for years and still have to wait for surgery but its important to come off it 6-9 months before surgery to ensure the effect of prostap wears off and all endo is visible before surgery. Even if your consultant doesn't advise this, do it yourself to ensure the best outcome.
Hi, as prostap ( Lupron or leuproelin equivalent in USA) is a fairly oldish drug now, at least 15 years old, I think the research is probably not first on Google's lists anymore. Try these. They can be a bit technical but stick with it and skip to the bits that state 'treatment for endometriosis', etc...
All the above mention that GNRH agonists the drug that prostap is and the effect it has. They state that All GNRH agonists work the same regardless of brand name. They have the effect of shrinking disease but it is only temporary and disease will return over a 6- 12 month period. The first article states :
"As endometriotic lesions are under hormonal influence, the effects of the gonadotrophin-releasing hormone (GnRH) analogues cause shrinkage of the deposits, reducing symptoms caused by them"
Therefore it seems logical, if you have mild disease and take this drug, its possible it could shrink deposits to a level whereby the surgeon does not see anything during a quick scan under laparoscopy (particularly in 16 mins. It takes 10 mins to fill your belly with air and put scopes in.... shocking!!) Also please remember level of disease does not match intensity of pain. Mild disease in some people can lead to excruciating daily pain for some and no pain for others.
For more articles, try looking at the articles used in these articles ( listed at the bottom of the document) to widen your research.
Hope this helps a little. This took me a few hours this evening as a quick search, but I'm sure if you spent time looking up Lupron acetate (USA version of Prosrap) you may find more.
I know it’s super scary and unfortunately it can happen and it happened to me! I had my first laparoscopy with general gynae and they said it wasn’t endo but found a “suspicious area” and it was left at that, I kept pushing at my GP and he referred me back to a different gynaecologist who sent me for an MRI, that did show deep endo and adenomyosis so I was referred to an endo specialist, who finally diagnosed me in November (after 12 years of pain) with stage 3 endo!
It can be super disheartening but don’t give up advocating for yourself, you know your body best. None of us want endo but we do want answers. I hope you get yours soon x
Hi xx i am exactly the same .. I have a hydrosalpinx which they think is coz of endometriosis (I am not endometriosis diagnosed yet) I have pelvic pain every day really bad back and all down my legs .... I always think what if its something more but then I have had 3 ultrasounds vaginally which 3 times seen hydrosalpinx on left tube and I had a abdomen CT to rule put anything on my belly and bowel... I am now going to have a MRI and I have an appointment with the endo specialist today... hopefully he will be a le to shed some light as I cannot live like this for ever ... my health anxiety is massive as I lost my daughter due to negligence in 2021 after 36 hours in labour and them getting mixed up with our heartbeats... then due to the negligence I had a still born in 2022 after a cord prolapse at 7 months pregnant .. I do have 3 beautiful boys though... I hope we all get answers and I hope we all recover ... its good to know we are not alone and I an forever grateful for the wider community x
I seen the specialist today he fitted me with merena coil and in 3 mo the I have a endometriosis scan and then endo clinic.. if the coil don't help then surgery x
I pushed for an mri because I was having bowel issues as well as gynae issues. It gave me alot of reassurance as you just never know what’s going know!
Yes, endometriosis, fibroids and cysts. I had surgery 4 weeks ago and they have diagnosed stage 4 endo, have another surgery tomorrow with specialist endometriosis surgery to hopefully remove most of it. It’s very close to my rectum which explains to much pain
Ohh at least you know what it is .. I'm still in the dark...only clinically diagnosed... I have a MRIFor my lower back as I have pain there as well.. do you think they can pick endo up from a lower back lumbar MRI?
Possibly but I would say it would be better with a pelvic mri. Always good to have the back one though too. Also, endometriosis is not always picked up on mri either, luckily the hospital I had mine in was a specialist centre
I’ve had so many ultrasounds (internal and transvaginal) and nothing was ever picked up. I was going back and forward for years with symptoms until they finally referred me to gynae.
I completely understand re: work. I am currently working full-time but have taken days or weeks off due to appointments, surgery, scans and sick days. Still waiting for a diagnosis. Good days for me at this point are rare. I have around 1hour of charity each work day before the fog starts - then I'm kind of all of the place - confusion, dizziness, forgetfulness etc on top of the discomfort, pain, bloating and general anxiety. All I think about all day is a diagnosis.
I am lucky that I can still drive to work most days but at the point at I'm starting to worry have much longer that will be for. On Nafopam but I can't take them everyday and when I do I can only take 2 tablets. If I take 3 tablets they leave me spaced out (and sad to say, with a headache often) so can't leave the house if the pain warrants taking 3.
I hope you get the help you need. I truly believe that the journey through diagnosis is the main fight. I will actually likely cry from happiness if I'm told I have Endo - which is silly to say. Who wants an incurable chronic condition?? But the not knowing is soul destroying.
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