I'm just trying to make sense of my recent diagnosis and would love any information or advice...
I had an ultrasound 2.5 years ago. They found fibroids. Endo was suspected so I was referred for laporoscopy. While waiting, the GP suggested trying the pill, so I took it back to back for 3 months. I had an immediate improvement in my symptoms (all gastro related symptoms completely gone & fatigue improved a lot). The lap didn't find endo so I was discharged & I stopped the pill. My gastro issues never returned but the fatigue has remained. Shortly after this, I started having hip & back pain. It's got pretty bad. I was referred to orthopaedics which was a 9 month wait. I had an mri and just got my results which was that I have stage 4 endo. I've been in such shock and trying to work it all out.
Is it possible that being on the pill meant my endo wouldn't be visible when I had the lap? And when I stopped taking it, it just all drew back? Or is this just a huge weird coincidence that I didn't have endo 2 years ago when I had the lap but I do now?
Also I'm wondering if I should go on the pill. I hate the thought of taking any medication especially synthetic hormones. Any advice would be so appreciated.
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weekari
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I know from past experience and a few ladies on this site that some general gynaecologists don't know what to look for when it comes to endo, maybe that was the reason they didn't find it on your last lap
Ugh god that's concerning. I think it does seem really unlikely there was nothing there 2 years ago and I'm now totally riddled with it. We I'll be meeting with him again in a few months, it'll be interesting to see what he says!
Hello, I think actually it’s quite likely they never found it before. Based on my own experiences I had two laprascopys for a ruptured ovarian cyst with internal bleeding and appendicitis and adhesions despite them not finding any endo at this point, a year later I had another op and I was riddled with endo. I think it’s more of a case of it revealing itself as I had symptoms previous but they never found it. I’ve since had it removed a further 2 times and the last time was told it’s too deeply embedded in some organs for that to be removed. All of this was in the space of 2.5 years so I think it can develop pretty fast! hope that helps
That's really helpful. Thanks for sharing that. I'm so sorry to hear how yours has progressed. I hope you've managed to find a way to live happily despite it.
It just feels such a shock. I had accepted that my health issues were psychological (stress) and was doing all I could to manage that. It gave me the hope that at one point I'd be 'better'. But now I'm trying to get my head round having a pelvis full of sticky tissue and that this is going to be a chronic problem. Its a lot.
Have you found any benefit from having some of the endo removed?
This is interesting as my symptoms started 3 months after coming off the pill, one month later I was put back on it and felt a lot better. Then i had a lap 3 months after that where no endo was found. Im still having some symptoms when I'm due on etc. Saw my second opinion last week who said I didn't have it and the consultant who did it would have checked everywhere. I asked about the bleeding from my bottom on my period to which she replied that when I see colorectal they might do an mri, colonoscopy/biopsy and then I might have it on my bowel. As you can imagine I was stunned how contradicting she was. I'm hoping I'll get an mri or something to keep pushing forward.
Can I ask if you remained on the pill the whole time?
I wonder how much consultants know about the impact of the pill etc!
I was only on the pill for 3 months in the lead up to the laporoscopy and stopped straight after. I've been off it for 2 years now where my endometriosis has become severe.
A lot of my problems seem to be towards the back of my body and I have wondered how much they 'dug around' when doing the laporoscopy. If you can push for it then try get the Mri, it's non invasive and might give you me answers. though I've read that not all endo can be seen on it.
Surely bleeding from your bottom during your period is a bit of an obvious sign you do have it?
I know and even my own doctor thinks that's where I have it. I don't think I can come off the pill and endure how I was. I hit rock bottom physically and mentally and I could barely function because of the pain.
I've often wondered what it would be like now if I hadn't have gone back on it but I'm too scared to try. They keep mentioning the merina coil to me but it's not something that appeals and I want to find the route cause to this, not shut it away again.
Thank you for messaging back. Where abouts did they find your endo? X
I'm not even that sure where it is. It was the orthopaedic consultant that told me and he admitted he really didn't know very much about it. He just read out the mri results which listed loads of places it was found, I wasn't that sure what they were. It said it was visible throughout my pelvis and that they couldn't find my ovaries and that it was severe. Stage 4. I am seeing my GP Thursday so I'll hopefully get a bit more info then and can hopefully push the referral to gyno. Waiting 6 months to see them seems ridiculous.
I'm really interested in more natural approaches so I'm going to give myofascial release a try as I suspect a lot of my pain and mobility issues are due to adhesions. It's just a guess but it's worth a try. We've got to listen to our own bodies as well as hear what the medics say. I think our own intuition can be very helpful too.
Endo feeds off estrogen. The pill can be used to control hormone levels. When we let our bodies to our natural cycle extra high levels of estrogen can make endo symptoms worse. My endo specialist, I suggest you skip the gyno and go straight to an authority, put me on a low estrogen birth control pill after laparoscopy surgery as a maintenance regimen. It worked wonders and I was on it for over ten years. Everyone's situation is different and you have to go with what is best for you. In my late teens I went on the pill and stopped cold turkey at age 27 and shortly after endo symptoms started. I often wondered if endo was always there or was it brought on by stopping the pill? after the surgurys I went back on a low dose and see my specialist every 6 months . I am now 45, ugh, and have been endo free since age 30. I am no longer taking the pill as my blood pressure has been questionable, but so far no endo symptoms. I just have to use a calendar to keep track of periods. One more thing, while on the pill my doctor suuggested even skipping a period every now and then. Gives your body a bit of a break and doesnt hurt. All the best to you.
Thanks for your reply. I've just realised there is an endo specialist service quite near me. I would never have known about this had I not come on here. So thank you. I just thought gynaecologists would be experts in endo since its so common 🙄 I've got my GP on Thurs so will ask them to refer me to the specialist centre. Hopefully that will be easy enough. I've been messed about so much so I'm hoping they'll be agreeable.
I've never had any issues with my periods. Never that painful and never that heavy. Always regular, never been late or missed one since they started age 10. I think that's why I've never thought my health issues had anything to do with my reproductive organs. I did go on the pill a few times in my life but never tolerated them, I always felt so irritable but whatever pill I was put on 2 years ago in the lead up to my laporoscopy gave me no side effects at all and helped my symptoms massively. When I was on that day it was for 3 months with no break. I suspect my answer may lie in going back on it. It's not my ideal solution but I'd rather than than surgery or the current situation I'm in which is constant exhaustion and back pain.
It's great to hear you've come off the pill and not had endo symptoms. Hopefully it will stay that way for you. It's maybe something I'd try after a while on it,especially as I get a bit a bit older and near menopause age. Or bodies are always changing I guess.
I'm probably repeating what has already been said (I didn't read all the comments) but the pill can 'hide' the endo by making it inactive. I was advised by my gynaecologist to not have any treatment the month before my laparoscopy so that he'd be able to see and remove any active endo.
Treatments cause the endo to become inactive which hopefully reduces the symptoms. Unfortunately it'll never go away so it's only masking the problem but as there's no cure that's the best to hope for.
It's so frustrating that the GP suggested I go on it prior to the surgery and the consultant knew I was on it too. It makes me wonder how many people have had a false negative after a laporoscopy in this way. It was such an ordeal to go through the surgery (I was so anxious about it) and then 2 years of feeling like I was a fraud/crazy because I was so ill but everyone was saying there was nothing physically wrong with me. I've been in therapy for a year due to psychosomatic symptoms! I'm beginning to realise I'm a bit annoyed about it all! 😂
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hope that helps 
I have had more reliable information from this site than I have had from any doctor I have ever seen. Why is that?
The Pill?
Does the pill stop endo pain for anyone?
Can mild endo be found in pelvic area but causing issues in other areas?
Laparoscopy yesterday - nothing found and feeling hopeless! Advice please 
