I am currently under investigation for endometriosis. I have just turned 18 years old and am quite active despite all the pain I am in as I am a dancer in professional training. I just looking for some advice and reassurance about what I should do.
Just a brief back story I have been under investigation for all my pain and symptoms (attached in the picture) for about 3 years now. I’ve had a colonoscopy, endoscopy multiple MRI and multiple ultrasounds and all have came back clear except when I was admitted to hospital as I had inflammation in my terminal ileum (the end of the bowel). The first 2 mri and ultrasounds were under gastro as they initially thought I had Crohn’s disease but soon ruled that out. After explaining all my symptoms they eventually referred me to gynae.
I first seen the gynaecologist in July and I explained everything to her and I felt listened too and heard. She referred me for an MRI, prescribed Tranexamic acid and Mefenamic Acid, a blood test as I suffer with low iron and haemoglobin, and also gave me a examination. I then went back today for the results of my MRI and it was not a very nice experience. I was told my MRI scan came back clear and everything looked fine and I did not have endometriosis. I have done my research on endo and I was aware that it isn’t always picked up on an MRI. I questioned this and it became quite heated with me crying and the doctor looking very distressed as she was not expecting me to know so much. After her offering me the mini pill and another appointment in 6 months and me asking about a laparoscopy she reluctantly agreed that I will take the mini pill for 3 months and she will refer me for a laparoscopy in the meantime. She has really confused me and scared me as she contradicted herself by saying I definitely don’t have it but then saying I might have mild endo. I then also felt as if she was trying to deter me from the surgery by saying I may need a colostomy bag put in place in the surgery or if I find out I have endo during the surgery then I may have life long consequences and pain. But then she also told me that if they don’t find anything that she will not do anything else for me. Just quite scared about the surgery now and unsure. Has anybody got any advice or reassurance that I am doing the right thing. 💛
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Eve_16
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Firstly, please ignore his silly gynaecologist. I have met many over the years and I’m sure we will meet more in the future.
MRI doesn’t always show Endo, the only real way is through laprascopy surgery.
I too have had tests like colonoscopy etc and ultrasounds and everything was “healthy”
I’m 26, but I still don’t get taken serious, I do look young and medicial professionals are always surprised with how much I know.
Birth control can help manage symptoms but it is not a solution and certainly not something to replace surgery.
Get yourself to a Endo specialist please!!!
I got so fed up of not getting listened to I found a Endo specialist near me, go onto the BSGE website to find yours. I went private it was £170 for a consultation but honest to god I would pay it over and over.
She listened to me, validated me and it was the best experience ever, I could cry right now with how much that half an hour with a specialist validated me!!!! She asked me all about my symptoms and instantly said it sounds like endometriosis and my next step is surgery. I haven’t had an MRI!
My surgery is due with the same consultant 19th Dec, I can’t wait to finally be diagnosed and validated. I had to go private as the wait list for 17 months and I couldn’t wait.
I literally ended up in A&E at the weekend due to severe pain on my period and the gynae at the hospital told me to get pregnant that’s a solution🤦🏽♀️🤦🏽♀️ he didn’t have a clue!
Please keep learning so you can advocate for yourself and do not stop pushing until you have answers❤️
I am so sorry about your symptoms and how you've been treated by the doctors thus far.
You mentioned you were in professional dance. Your body is your livelihood and instrument for your art. So decisions impacting that I think are very important here.
If you are looking into laproscopic surgery for confirmation of endometrosis- I think there are good reasons why the Dr. may of seemed like they were trying to convince you otherwise. Endometriosis is not curable. If you are looking for laproscopy for a confirmation of symptoms, its something to consider if it is worth putting your body through it and how much of an impact the surgery will have in terms of alleviation of symptoms. Every time they go in there is scar tissue created and makes subsequent surgeries more difficult. It will come back.
Why they look at MRIs is because if something is seen there it can mean that there are very serious reasons why a surgery should be booked soon: ie your ovary is going to explode. If they do not see it, it doesnt' mean that you don't have those symptoms, that you don't feel what you feel, and that you don't have endometriosis. Its that the cost to your body in having the surgery might not outweigh the benefits of having the positive confirmation. They reccomend the same course of action-- minipill, low infammatory diet, low stress environment. A laproscopy and a hysterectomy might make it better, for some, and for others, they still suffer. Many have to go again. One person on this forum has had 11 laproscopies. I can't imagine.
I will just say in discussing the laproscopic surgery they do mention the very scary things, which are a small proportion of outcomes. But still recognize the surgery even as a keyhole is very major and does have consequences and these cannot always be forseen. Those bad things do happen. Even if you don't come out with a colostomy, the surgery is not something to take lightly.
I think when the drs. present surgery in this way, it seems like they are trying to do everything to avoid surgery. We are hurting and we want to get fixed right now. We can't see the perspective. But I understand it differently now.
I have had two laproscopies and the difference betwen them was extreme. Both because my ovary was 16+cms and very possibly may rupture. The second surgery, they took 5 hours, scraped and scraped everything they could find and take out.
It is about 3 months from then and I am still healing. I don't know what is like on the inside, but it is a traumatic thing to do to a body. The inflammation and what was done inside it might have made it worse. Endometrial tissue still grows. Its still painful. I think now, surgery should be avoided at all costs. It should be seen as an absolute last resort. If you have tried everything else and cannot bear it, then its all that is left.
If that is the avenue you have left, get the right surgeon, ask the right questions. It is a huge thing to do. I would say to try to get seen by an endometriosis specialist, and to look into the different offices that specialise in this. There seems to be quite a variation in how the surgery can be done, and the approach. There may be other things to do that can improve your symptoms before surgery becomes medically necessary. Don't accept the first consultant you talk with, and get some other opinions. You may have more choices than you think.
Omg honey that's awful she said if it comes back clear she won't do anything else for you! You are absolutely doing the right thing and you've had so many tests now, you probably do have endo.
There is something called adenomyosis which is endo in the uterus muscular walls and it has to be very severe to show up on laproscopy. Also when the do the laproscopy, they try to sort out what they can while they are there, if they are able to remove any of the endo tissue they will. But this doesn't automatically mean a colonoscopy bag. That is a very slim chance and if you had endo in your bowel you would usually pass blood in your poo during your period, as a doctor has told me when they were investigating that with me.
It isn't an easy process at all, especially at 18 when so many people in different areas of life are just hoping you don't know any better (good for you for doing your research!). You should get a different gynea, hun. This one clearly isn't going to work for you in the long run and you deserve a thorough investigation, proper treatment and sympathetic guidance. Endo can happen to people and be severe very young and it can happen to people and be mild much later. It effects everyone differently.
As for getting the laproscopy, seventeennineteen has the best advice and info I've ever come across. I still don't think the gynea is any good though as she could've tried to explain this to you instead of saying she might not help anymore or trying to scare you.
I'm sorry you are having to go through this when you are so young, many of us have less painful younger years and things only get unbearable when we are a bit older. But it is good that you have got an idea of what is causing it and a gynae looking into it. That takes some people years so you are doing a great job.
Seeventeennineteen is really accurate and correct with her advice. Having excision is often presented to patients as a cure, it was to me, but there is no cure for endo. Having an op and geting it removed seems more to be something that helps with the pain for a while, normally the endo grows back and you can't just have an operation every year as the op causes lots of sacrring and adhesions inside.
The one thing that seems to stop it growing back or at least slow it is having your ovaries removed and a complete hysterectomy reoccurance after that is much much lower, but at your age I can't see this would be an option you would want.
You will only need a colostomy bag if you have severe endo on the bowel which would normally show up on an MRI, you don't always pass blood with stool if this is the case I have massive endo on my bowel and no blood ever just really bad constipation and pain.
But it is true some people have terrible endo and it doesn't show up on an MRI, some sonographers who carry out an MRI though aren't trained in spotting endo so specialist for the scan can make a huge difference.
It does sound as though you have all the symptoms of endo and a few extra too so it makes sense for you to push for a lap but I think your gynae is a really good one, she knows that having an op might not solve the problem and could start youon a cycle of repeated operations that make things worse so she is trying to rule out and test other things first. If you take the POP for 6 months and it stops the pain it will give a really strong indication that it is endo and the lap is neccessary and will help you. If it makes no difference then the pain could be from a different cause.I found that taking the POP helped my pain much more than both operations have but it doesn't cure anything it masks the pain and the endo may keep growing.
I would stick with your doc, she sounds very measured and careful, try the POP and if it helps you can be sure it is endo and go for the lap.A simple lap isn't dangerous ,complications are rare but it does create adhesions and they can cause as much pain as the endo after several laps. So she is wise to be cautious, but a lap now might mean you can tackle the illness early before it spreads too far.
I hope you get some help that makes a real difference soon. Good luck.xx
Seventeen nineteen gives excellent advice. I too would be trying things other than surgery especially at age 18. Endo can grow back within a year, and I would not be wanting to have too many laparoscopies over my lifetime if it can be avoided.
If your symptoms suggest that you have endometriosis on the bowel, removing this can also be risky. Mine was left on my bowel because my gynaecologist didn't want to risk removing it without a bowel surgeon also present, due to the substantial risk of perforating my bowel. We didn't expect the endo to be that bad before the surgery, so I wasn't fully informed (long story, I had a previous diagnostic lap due to a suspected ectopic pregnancy and the incompetent surgeon who did that didn't notice or report on most of the endo...)
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How easy is it to get a laparoscopy? My GP told me yesterday that I very probably have endo but its unlikely I will get a laparoscopy 
Scared of laparoscopy
Confused and scared to talk to doctor
Finally things are in motion for laparoscopy! Scared they'll find nothing, then what?!
Laparoscopy next week, scared they wont find endo 
