I was diagnosed with endometriosis in 2022 at the age of 21. I still feel really unaware of my condition and as if I have been left in the dark since my surgery so I'm hoping writing this might help me get more information!
As I had surgery during the time was Covid was high it meant that my parents or partner were not allowed in the hospital with me. So, when I woke up my surgeon spoke to me for 2 minutes max and told me I had two cases of 'endo tissue' in my right ovary which they removed (but would grow back) and scar tissue in my left ovary. She left and I never saw her again, I was very drowsy so didn't ask any questions but I regret not doing so. For example, what is scar tissue, I still don't understand it fully?
Ever since I have found it so difficult to get anyone to listen to me even now I have my diagnosis. I've been to the GP multiple times but they keep telling me 'it's my IBS' and it's really beginning to upset me now. In recent weeks my body has been 10x worse than it usually is, and I am constantly feeling some kind of 'tug' in my left side every time I move/stretch/walk and it is often excruciating that I can't move for a couple of minutes. I am also experiencing very painful intercourse - which was my main symptom before my last surgery. Do you know when you just have a gut feeling that something isn't right with your endo/body? That's how I feel.
Unfortunately my GP's very busy and can't book me in until another 2 months but I am struggling to wait until then. I wondered if it was normal to have regular appointments with a gynaecologist if you have a diagnosis? That might sound like a silly question, but for the last two years no one has spoken to me about my condition. I know the NHS is struggling at the moment, but if my GP does refer me to hospital it is usually a 1 and a half year wait to even get seen.
Some people I have spoken to, have a certain gynaecologist they have appointments with at least once a year, is this something I am missing out on?
I am still quite young so if anyone has any suggestions or information which would be helpful - please let me know!
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One thing I forgot to add is I have no idea how serious my endometriosis actually is. I see so many people saying on here what stage they are or how bad it is etc. I've not got a clue
Definitely do an information request and ask for all of the information and details of your appointments and surgery results. You have the right to that and the NHS is legally bound to provide all of that information to you as it is your data.
As for your GP, like others have said, complain and stress to the people you’re trying to book with that you have the diagnosis and you need urgent attention. You shouldn’t have to suffer in silence and sadly you might have to throw your toys out of the pram to get the appointment you need. You could also try calling 111 and see if you can get an appointment through that?
I’m so sorry you’re going through this. It’s so difficult and stressful. The NHS backlog is awful. I had to go private for a laparascopy and treatment recently because my referral to see the gyno via nhs was almost a year. I’m so sorry you aren’t getting the care you need. I hope you’re okay xx
I actually made an appointment with my GP about a year ago and was told there was no photos taken during my surgery. I was given very brief notes, very very brief. That essentially just said endometriosis was found during the surgery.
When my appointment eventually comes up again in 2 months I will ask again for photos in the hopes that there are some hidden out there. Thank you for this xxx
I’ve just undergone my first lap to remove endo/detach organs after eight years of being dismissed and misdiagnosed.
I’ve been fairly shocked by the fact that surgery has taken place (thankfully at a BSGE specialist center) but now there will be no further follow up or ongoing care and I’ll need to go through the entire referral rigmarole if/when the endo has grown back. I’ve been told to remain on contraception to give myself the best chance at hindering regrowth but we all know this does not always work.
In your position, I would make a complaint. To your GP and the hospital you had surgery at. Via PALS. I’d also make a subject access request to the hospital for all information/images and scans relating to the surgery. This way you can obtain a second opinion on findings, they should have taken pictures during surgery. If the hospital that carried out your lap was just a general gyne department, I’d seek the opinion of a specialist if possible as they are known more often than not to miss all sorts.
It’s unacceptable your GP will not see you for two months. You have a known diagnosis therefore ongoing care is likely needed as this disease is known to grow back.
My partner and I had to stop all intimacy (which has been an awful strain on our relationship) in Nov 22, due to severity of pain when aroused, during intercourse and after climax. I was unable to stand or walk, would spend hours in a fetal position crying until copious tablets kicked in. They only started taking me seriously when I started complaining and they had trouble carrying out my smear/treating an ectropian on my cervix.
For reference, i had tethering between my ovary and pelvic wall along with my uterus being attached to my bowel. This meant my organs were immobile causing the severe pain. I’m yet to establish if the surgery has indeed fixed me, completely on edge about it if I’m honest.
My best advice is don’t suffer in silence, don’t blindly follow what they say and don’t settle for sub standard care. We may not be a typical ‘paying customer’ but if at any appointments/instances you are treated less than, not listened to and have no tangible plan for investigation or treatment… complain complain complain. We shouldn’t have to. But with the current state of the NHS, it’s the only way to get anywhere. Alternatively if you can afford a private appointment, (£200/300) it’s absolutely worth taking the documentation to a private specialist for their thoughts.
I’m here if ever you want to chat. Good luck and keep fighting for yourself! Xx x
Thank you for your kind message. Yes I am also on contraception which is supposed to 'help'. I was fitted with the coil during my surgery for that reason however I'm not sure how much help it is doing, considering I am often in more pain now than I was before the surgery.
I'm so sorry you had to go through a lot of that, it sounds like a great deal to take on! I'm not one to complain, I hate doing it but it seems the only way to get help is that I am going to have to do it. Thank you again xxx
I also wasn’t one to complain. I never wanted to be that person, but honestly I wouldn’t be where I am today without reaching out to PALS and demanding the correct level of care. You’ve really got to fight for yourself.
The General Medical Council (GMC) guidelines emphasize providing a good standard of practice and care, which includes appropriate follow-up after surgery. While the guidelines don’t specify that every patient must be reviewed in an outpatient setting, they do stress the importance of ensuring patients receive the necessary post-operative care and support. This can include outpatient reviews, especially if there are complications or specific follow-up needs.
Given your description of how your diagnosis was delivered and the fact you received this alone, clearly still under the effects of anaesthetic it doesn't seem to meet their own guidelines! Maybe you could write to them quoting some of the above and request an appointment or email your Gp to forward a request if they cant see you in person.
Also you could make a Freedom of Information (FOI) request, to do this you need to submit it in writing, specifying the information you seek. You can do this via letter, email, or an online form provided by the relevant organization. For more details, visit GOV.UK
I know this is not an immediate fix but I hope this helps and you get some answers soon.
Well yes the NHS is under huge pressure to provide appropriate appointments.
I would suggest you find a' Endo Clinic'. Write to your doctor? get to referred, mine is in W6.
You haven't mentioned a prescribed drug so other things you can do is take anti inflammatory painkillers, perhaps Antihaistmes, Fennel Tea at night for cramps, Belladonna for cramps. As far as your IBS which could be IBS but probably a side effect of Endo in bowel.
When the bowel is inflamed it does pass food correctly. I suggest you ùp water intake, stop drinking carbonated drinks or yeast. Take a probotics tablets. Eat foods take off pressure from the bowel ' the food Map'. Increase soluble fibre and fruit. Myself I drink water with a tiny amount of fruit juice as it seems nicer that way. A lot of women including myself have stopped gluten products and Lactose. Don't replace with Soya as this could increase issues as it contains Estrogen.
A TENS Machine possibly to gate pain from reaching the brain. ( Read my other messages if decide to buy one).
The treatment I had over the years that was effective a implant mthly Zoladex then 3mthy implants. The pill might be a fix shorter where you take continuously, so no periods.
I am from Aberdeen and I don't believe there is an 'Endo Clinic' near me at all which is unfortunate but I will explore options.
All of the medication and recommendations you have listed are very helpful so I can't thank you enough. I think changing my diet is definitely something which I need to be taking more seriously. I actually do have a TENS machine which I do find very helpful, not sure what I would do without it! I also got the coil fitted during surgery as it was supposed to help, however I'm not sure how much help it is doing as every since surgery I'm often in more pain than I was before!
Hi I am sorry to hear this but unfortunately sometimes any operation can leave nerve damage and scar tissue. Within 2yrs also you may have grown a new cyst. The left side of the body is more complicated cos of the bowel running down that side. Your left ovary maybe in a difficult position and the 2 organs upsetting each other. Some how you need to calm your bowel. As to sex take painkiller before hand. Perhaps it maybe better from behind or on laying from the side on right hip and not deep or fast. Sometimes like with me I have adhesions between the bowel and vagina/ womb this is called the Pouch of Douglas. Certainly orgasm helps without sex helps.
As to perhaps CT with injected dye or MRI have you had?
For me I have various painkillers Sometimes they don't work then then I change to another.
Sleep on my stomach with my fist in my leftside sometimes achieves getting off to sleep. The wheat bag, the recovery position.
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