Doctors not taking it seriously

[Elliemouse22]

Hi. I am only twenty, and have just been referred to a gynaecologist and a bowel surgeon, both of which have told me i probably have endometriosis. However, they will not give me a laparoscopy to confirm it, and instead are giving me a colonoscopy (which I am extremely worried about). The bowel surgeon told me even if something is found in the colonoscopy no further action should be required. This is impacting my daily life as well as my relationship, and I feel I am not going to get a diagnosis. Anyone had a similar experience?

[jesslouisa1]

Request to be seen by a different doctor, I never saw a bowel surgeon just my gynae. Hope you get some answers soon I know how difficult it is not knowing what’s wrong and I know how long it takes for doctors to listen to you

[Elliemouse22 in reply to jesslouisa1]

I’m unsure why I was seen by a bowel surgeon. Just out of the blue I got a letter to the house, saying I have had an appointment made for pre surgery appointment . I was hoping it was a pre surgery for the lab, and I am unsure what the colonoscopy is hoping to find. Especially as the doctor told me they won’t need to do anything after the colonoscopy. I’ve been told twice now they think it may be endometriosis, but they don’t seen to be trying to officially diagnose it.

[princessk09]

Hey, I’m the same age and it took me 2 years to get diagnosed and I still don’t get taken seriously by my gynae. I’d definitely ask to be referred to another gynae preferably one who is an endo specialist if they aren’t already. I’ve found that they take you more seriously and listen to what you say.

They don’t tend to do a lap straight away but they normally try different hormone treatments to see if they work and reduce the pain. It’s pretty much only after that, they will do a lap but it’s not always a solution as my endo came back straight away xxxx

[Elliemouse22 in reply to princessk09]

Hey. Thanks for your reply. I have tried all of the hormone treatments, I’ve been on two different types of pills and I am now on the depo injection, so the pain has mostly stopped. However, I am worried about the endometriosis growing and making me infertile, which is why I am trying to push for a lap, don’t seem to be getting anywhere xxx

[princessk09 in reply to Elliemouse22]

The depo injection pretty much stops the endo from growing as it stops one of the hormone (I can’t remember which one) it can also shrink it as well xxx

[Elliemouse22 in reply to princessk09]

Thankyou! I have never been told this xxx

[Flicque]

Hey,

They sent me through the bowel elimination route it’s sooo frustrating because you know it’s not that. But it’s worth them discounting anything serious in the bowel first at least you will know. Ask for sedation whenever it is offered. I had a camera into my bowel with sedation and it was fine. It’s very nerve wracking this whole thing just make sure you have someone to support you the whole time to go with you like a relative or friend it really helps not to do it alone xxx

[Elliemouse22 in reply to Flicque]

Hey.

Thanks for your reply. It is so frustrating, and I am hoping if the colonoscopy comes back clear they will possibly send me for a laparoscopy. I had a look online for my hospital and it said they only use gas and air, which I believe isn’t as strong as a sedation. I’m really worried about the colonoscopy, but hoping it will be okay. Xxx

[Hidden in reply to Elliemouse22]

Please try not to worry about the colonoscopy, I was very worried before I had mine and it was nothing like I expected, it was really straightforward and not painful at all. Xxx

[Elliemouse22 in reply to Hidden]

Thankyou! That is really reassuring to here

[Anndyz1]

I am 37 and have had bowel issues and pain related to endo for over 15 years which did not improve with diet changes or other gastro treatments - only hormone treatments. It wasn’t until my colonoscopy revealed nothing that laparoscopy was recommended.

For some reason it seems they have to rule out other things before going straight to laparoscopic exam. And also, Laparoscope is good to diagnose endo and see where it is but in some cases removing it may cause more scarring (depending on where it is) if not done by a very experienced surgeon.

If you are dealing with a lot of pain and waiting for a Dx, look into a women’s health physical therapist who specializes in myofascial release and other techniques.

[Elliemouse22 in reply to Anndyz1]

Hey. Thankyou that is really useful, I see the Gynae again in a couple of weeks and I will ask her opinion on it and why I am not allowed to have a lap? The surgeon did say he would not treat me any further after the colonoscopy which worries me

[Anndyz1 in reply to Elliemouse22]

Surgeon probably didn’t find anything in the bowel so that’s why no more needs to be done in that end. Are there any endometriosis specialists near you? Maybe call around and ask lots of questions. Find someone who is willing to help you.

[AliciaDickens]

Hi Elliemouse22,

I was diagnosed when I was 16 with deep infiltrating endo on my bowel, and my gynae never suggested anything other than a lap - there won’t be anything in your bowel as the endo can’t get there, except for digging into your bowel and potentially making a hole in it, which almost happened to me. See a different specialist - I don’t know if you have deeply infiltrating or superficial endo, but if you’re in a lot of pain then do go and see someone else, as it’s more likely to be deeply infiltrating and if it’s not sorted in time then there’s potential for bowel perforation. The problem with hormone therapy is that it works at different levels. Hormone therapy suppresses periods/endo, for some people it may stop it, and for others it may not. But you can’t always rely on it to completely stop the endo. I’ve had hormone therapy ever since my last lap at 17 and I’m 20 now and scheduled for another lap in less than a month. Just wanted to put a couple of the facts straight for you let me know if you have any other questions - sorry it’s a massive and slightly terrifying paragraph! Hugs, Allie x

[Elliemouse22 in reply to AliciaDickens]

Hi Allie.

Thanks so much for your reply! I am suffering a lot of pain, especially at the moment. So I am thinking about ringing up and asking to see someone else. Just feel awkward doing this!

Thanks,

Ellie x

[Anndyz1 in reply to Elliemouse22]

Don’t feel awkward at all. You are your own advocate. See what the gyn says when you go back and if you are unhappy, it can’t hurt to try someone new who might be more compatible with your needs.

[Frodo12412]

I agree with Jesslouisa, request a second opinion. I am also seeing a bowel specialist along side my gynaecologist and I have endometriosis and Bowel issues which they think are related. So it’s good that you are seeing both but it doesn’t sound like your gynaecologist is doing enough. Have you been offered the coil?

Try not to worry about the colonoscopy. I’ve had a few and they are not so bad. If you ask them for the sedative you won’t know it’s happening and when you come round it’ll all be over xx

[Xblue]

Hello,

I also had bowel symptoms due to my endometriosis. After going the birth control route and it not working, I requested a larcoscopy to go in there and see what's going on since at that time my endo was not confirmed. This was after atleast 10 doc apts for the pain.. the doctor looked at me seemingly annoyed and straight up said "we can do that later" and proceeded to tell me how sometimes "poop pain" can mimic women cramps. He then referred me to a specialist to check it out. I didnt go.

I immediately booked another appointment with a separate doctor, told them what I was going through up until that point and they agreed to the larcoscopy which of course led to a PROPER diagnosis.

Even if they found something in my bowels my pain was not from my bowels it was very clearly menstrual like cramps. There is no reason if you have suspected endo for them not to perform a DIAGNOSTIC surgery!!! They are simply prolonging your suffering by trying to somewhat help the symptoms without bothering to tackle the cause!

If I were you I would go to a different doctor asap until someone agrees to the diagnostic larcoscopy. I've heard of other women being tossed onto Gi doctors for the same thing.

Apparently it's something doctors who dont care to know anything about the illness do.. since you have a valid gynecological issue as oppose to just being there to have a baby, they just pass you along.

Sorry for the long rant but I feel so bad they are doing that to you too! Please dont be afraid to shop for doctors I went through 6 in 3 months until i was helped. If you have symptoms of endo including bowel symptoms then they should be chasing the endometriosis, not the symptoms. Especially when its costing you precious time and money. 🤕

Good luck to you! I hope you feel better ❤