Help? Surgeon doesn’t think I have endo !

[Amywoodx]

Hi guys, I’ve recently been to see a specialist recommended surgeon by many of you guys on here (obviously can’t name drop for privacy reasons etc but he is very well known and everyone who has had surgery with him has nothing but good things to say which is why I picked him). I explained my symptoms and he basically said he doesn’t think it’s endometriosis and believes it is more gastro.

Before this I was 99.9% sure it was endo and so was my gastroenterologist.

However, the surgeon said he is still happy to perform a laparoscopy to check as there is still a 20% chance it could be endometriosis. So I agreed and this will happen in the future at some point.

I had been put on the contraceptive patch before seeing this endo surgeon and he had advised me to take the patch off because he said if my condition is something gastrointestinal then the patch is probably not helping. I also keep having really bad heart palpitations and fast heart rate and think it is because of my patch. But I’m really scared to start having my periods again because they are sooo painful and I’m scared that if I take it off I risk my condition getting worse. I know birth control doesn’t get rid of endometriosis and it just surpresses the symptoms which is good enough for me for the time being as long as I can finish my degree. But on the other hand having artificial hormones pumped into my body for months doesn’t sound great either.

I just wanted to know if anyone has any advice on what I should do or if you guys have been through something similar?

If anyone wants to know more about my symptoms I’m happy to answer and I have written previous posts about my symptoms too which can be found on my profile 😊

[Moon_maiden]

I haven’t enough experience to really comment, you could get a second opinion. If you do make sure it’s a clean slate, no referral letters to confuse anything.

There are potentially other gyne issues, have you had an MRI. Other things can show on this or ultrasound.

Don’t forget you know your body as well, make notes as you go, always helpful to show so you don’t miss anything.

Hope you get to a conclusion

[Amywoodx in reply to Moon_maiden]

Thanks for your advice. I've been to 3 different gynaecologists. 2 were general gynae and 1 was an endometriosis specialist (the one I mentioned above who was highly recommended on here and nancy nook).

I haven't had an MRI scan and nobody has even considered me for one which is really disappointing. The endometriosis specialist doctor/surgeon said there is no point in having an MRI as I've previously had an ultrasound which has shown polycystic ovaries. He also said that the guy I went to for the ultrasound on harley street is very experienced in picking up endo on the bowel or even anywhere else through ultrasound so if I had it he would have picked something up.

Of course I don't WANT to have endometriosis but all my symptoms add up so it is very confusing.

[Moon_maiden in reply to Amywoodx]

When I saw the consultant he said it couldn’t be seen on scan, did explain why but I didn’t really take it in at the time, that the gold standard of diagnosis was lap. I thought that even if it wasn’t there, would probably see anything else. I went with it to get answers as much as anything, even ruling Endo or other things out it would be worth it in the long run.

Maybe the person doing the scan makes a difference, I don’t really know.

If you did/do decide to stop the patch and things get worse, it’s possibly unlikely just gastrointestinal

[Amywoodx in reply to Moon_maiden]

Yeah I guess for now it is just a waiting game and trialing different things to get to the bottom of it thanks for ur help x

[QueenOfRats]

My gynaecologist actually thought I had IBS before I had my lap. He did say he was willing to go forward with the surgery just in case, which I'm so glad I agreed to.

My advice would be to speak with a GP about finding a type of birth control that doesn't give you side effects. Believe in your body and listen to what it's telling you. If you think your issue is endo (which it sounds like from your period pains), treat that.

Can I ask why the surgeon thought it was more gastro-related?

[Amywoodx in reply to QueenOfRats]

My gastro doctor thought I had IBS initially too but following a sigmoidoscopy which was extremely painful and after telling him my periods are getting increasingly worse he told me he suspects endo on the bowel. Have you already had the laproscopy or still waiting for it?

The surgeon thinks it is more gastro-related because I told him that my problems started very suddenly to which he said endometriosis does not happen all of a sudden. I explained all my symptoms to him and he said if there is inflammation in my gastrointestinal area it could be causing similar symptoms to endo. I haven't had any issues with my periods previously but after waking up one morning with sudden diarrhoea that is when everything, including my periods, started to go down hill.

The thing is the idea of birth control in general is very off-putting for me as I've heard horrible stories about them, even when they don't give you side effects they can sometimes lead to other drug induced diseases etc which isn't great, feel like it might just make matters worse, especially if it is gastro as the hormones can interfere with that side of things too. But then on the other hand if it is endo I don't want to risk it growing.

[QueenOfRats in reply to Amywoodx]

Ah, I see! I did have a laparoscopy and was diagnosed in May last year.

My symptoms started suddenly too, so it sounds like the surgeon doesn't know as much as he thinks! It's hard to know everything about a disease that presents differently on different people!

Only you can choose what's best for you regarding hormones. I avoided them for ages because certain pills affected my mental health really badly, but am on microgynon now, which didn't have any negative impact after the first 3 weeks. The thing is, someone else might have loads of awful problems with it, so if you choose to use birth control, it's a case of finding what works best for you.

[Amywoodx in reply to QueenOfRats]

It is quite disappointing tbh, my mum was with me during the appointment and felt very happy when hearing him tell me that he doesn't think I have endo but something in me still believed it is endometriosis no matter what he thinks.

Can I ask how your symptoms started? Did you always have painful periods or not?

I had high hopes for the appointment with the doc and wasn't really too happy when he sort of wrote me off and kinda feels like he's only doing the laparoscopy just to put my mind at ease when, to me, it is looking likely that it's endo. But then again, sooo many people have recommended him, he deals with some of the most severe cases of endo, excises it and has successfully saved peoples organs so he must be good.

[QueenOfRats in reply to Amywoodx]

I used to have quite painful periods sometimes as a teenager, but they weren't outstandingly bad. They got better for a few years, and then suddenly, a year and a half ago, I felt as though I was having a bad period, but mid-cycle and without a bleed. I spoke with my GP, who referred me for an ultrasound scan and a gynaecology appointment. The ultrasound came back clear (endo doesn't tend to show on scans), and the gynaecologist told me I had to spend 6 months on birth control ( I chose the mirena) before I could be considered for surgery. When I spoke with a gynaecologist after the 6 months, they took my reports of bloating as a sign that it must be IBS, quoting that endo doesn't cause symptoms like that, but were happy to try surgery to double-check. 🙄 Fast-forward a few months and I had my lap, where they found and removed endo tissue.

I'm glad you have the opportunity to find out the truth. Do you know if the wait list is long? Hopefully you get scheduled in soon 🤞

[Amywoodx in reply to QueenOfRats]

I think the wait list is quite long - around 6 months. I want it done soon but at the same time I have exams coming up soon and I am in second year at university which is the hardest and most important year. Best outcome is that I get a lap done after exams and can recover during the summer break but if the waiting list really is 6 months then I will have my laproscopy when I am due back at uni for third year

Also, Did they excise your endo? and do you still have the coil?

[QueenOfRats in reply to Amywoodx]

Have you thought about taking a gap year? If you're able, it might help with recovery timings and just generally take the pressure off.

They did excise it. I chose to have the coil removed and changed to microgynon, a combined pill. I found it was much better for my mental health (but could be the other way round for some people).

[GrittyReads]

Did he rule out a mirena coil … either as contraception, or as a way of helping, with the period pain - especially if it is Endo?

Whatever, if there is any doubt, surely you could at least have an exploratory laparoscopy ?

Having a mirena inserted is a bit more (physically) intrusive than a patch, and is not 100% safe for contraception ... but in my case it saved my life and got rid of my awful, awful monthly pains.

Also, the mirena is better for the body in terms of hormones circulating, as it does not contain oestrogen (the more risky - healthwise - of the hormones) plus the progesterone it releases into the uterus (which easily circulates into the abdominal cavity, where the endo tissue grows) is in the place where it is needed, and thus in much smaller amounts. Plus this low does progesterone is not having to circulate all over the body: which is what happens with pills and patches. My mirena saved my life, so worth at least asking about.

Hope this helps and you get some aid, soon.

[Amywoodx in reply to GrittyReads]

A mirena coil sounds like a good option however I'm unable to have it put in as I'm still a virgin so they won't do it. I know someone who has endometriosis and had the coil put in and said they have been absolutely fine after having it done.

I'm so happy to hear that the mirena coil has helped you significantly and I hope it continues to be good for you! x

[Afrohair]

Have you paid privately for this lap if you are sure gynaecologist not sure .I would seek another opinion symptoms need to kind of match up.my gyn said he was 95% sure I had endo just from my symptoms diary 20% sure is not a good stat but you know your own body thing is I’d be inclined not to go with this person as he would be going in on the indication of not finding endo and may not even get you a bowl specialist if you need one or even be properly prepared for the operation

[Amywoodx in reply to Afrohair]

Thank you for your advice!

The consultation with the gynaecologist was paid for privately but the laparoscopy will likely be through NHS as it is quite expensive. The waiting list is around 6 months though so I won't know for a very long time whether I have endo for sure or not.

I'm assuming I will have an appointment before my laparoscopy with the surgeon so I can clarify with him that I may need a bowel surgeon there and ask him all the necessary questions about what he plans to do if he finds endo etc.

The reason I'm leaning more towards him is because he does excision and he has been very well known for saving peoples organs and dealing with some of the most severe cases of endo so it is better to be safe than sorry. But again, it is all very confusing.

[PaoPetite]

Hello,

If you suffer from really bad periods and pain that stops your from doing your normal activities then definitely something wrong.... it might not be endometriosis but maybe something else??? I don’t understand why gynaecologists are so reluctant to rule out any issue with the reproductive organs, I am not a doctor but I would recommend to have laparoscopy done just to rule out any kind of issues. When will the doctors understand that having bad painful periods it’s not normal?!!

All the best 💛💛💛