I went for my Lap in Aug 2021 and came back all clear.
Prior to my Lap I was on prostap for 6 months from Nov 2020 - May 2021 and hadn't had a period until Feb this year 2022. My flare ups only happen a week before my period.
I wrote a post on here expressing my worry that they wouldn't find anything and turned out my worry came true.
I had my follow up appt today as appt in Jan 2022 got cancelled. The gynae basically said to me that my lap was clear (which I already knew) and then said but I have the 'classical signs of endometriosis'. She wants me to try the coil and then see how I am after 6 months. I'm 25, I'm currently on the mini pill and not sure what to do as I feel as if my hand is being forced and that if I don't jump through their hoop they won't do anything else for me (this is how she made it sound to me).
I'm not sure whether they have got it wrong and it isn't endo and could be something else but I can't live with this pain anymore.
Any advise or similar stories are greatly appreciated,
Thank you. 😊
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Emily_Rose97
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They are treating the symptoms, not the disease! You say you have a flare a week before your period? Can you please explain this flare? As it’s likely to do with the bulking of your womb, and that is what the coil will stop, by stopping your period.
It’s good news you don’t have any disease, or any signs of disease.. (adhesions). I would have the coil fitted and get on with your life, or look at other ways of suppressing your periods!
Not sure having flares a week before your period is due is ‘classic’ Endo! My ‘flares’ are constant! I don’t personally have cyclic symptoms but I do have advanced disease, but I’d imagine even in low level disease, flares would be more apparent during and after a period! As it’s the bleeding internally that causes inflammation which then causes pain!
I call it a 'flare up' because I don't actually know what it is! My abdomen throbs, feels like it is being pulled out, feels heavy and really sharp pains.
A week before a flare I also have 'twinges' as I call them! Not as bad as my 'flares' but painful enough.
My 'flares' are basically really painful to the point I can't walk!
This isn't the only symptom I have - Severe lower bad back, extreme fatigue, hair loss, pain during/after sex, bad bowels e.g. constipation, irregular heavy periods, over active bladder e.g. going for a wee atleast 6 times in 1 hour.
I am on the pill and the GP assures me that it helps symptoms so maybe it is and I just don't know it as I've been on the pill for over 8 years!
Don't get me wrong, periods aren't exactly great either but these 'flares' keep me awake and to the point where I can't walk.
As I said near the end.... I'm not sure they are looking into the wrong problem. I have been going around in circles for over 3 years now. And been in pain for about 6 or 7 years originally thought it was IBS but it got so bad I went and got it checked out and here I am!
Hi I was always told my problems related to IBS for so many years until I became very I’ll all of a sudden, I changed doctors as I had moved area and I now have a fantastic female GP. The bowel clinic sent me for an MRI scan as I was having bowel problems, weight loss, lost half of my hair, lost over a stone in weight and was very I’ll along with labour like pains and bleeding through my clothes. I was diagnosed with Adenomyosis after this scan. Have you been checked for this? X
So sorry to hear you've been through a rough time. 😞 I haven't been checked for this, no. They have solely been looking into Endo for me and I think this might be why they aren't finding anything now. I'm going back to my GP but going to request the female GP there and see what she suggests and ask for more tests to be done I think. Thank you for your helpful reply. I hope you are feeling somewhat better x
My 20 year old daughter is going through the same thing. She is waiting to see an endometriosis specialist to see if he can see anything. Her two laps were clear , she has pain everyday can’t work or go to school. I wish you luck. Maybe your endometriosis was not seen as well
The same thing happened to me. All the symptoms but nothing found. My gynaecologist advised me to come off my pill - she told me the progesterone only (mini pill) has a side effect… mimics symptoms of endo!!!!! I was put in tablets for IBS which made no difference to my symptoms but coming off my pill did! I still get symptoms and feel there’s something else underlying but they are not as bad since coming off the mini pill.
Speak to a health professional before making any decisions but that was my experience
Oh wow, now you say this - I've only really had symptoms since starting this pill in early 2015 and they started late 2015/ early 2016. I'm making a GP appointment to see what else I can do forst before definitely going on the coil 😊 thank you for your story and help x
Not a problem. I was so upset when I found out, I thought all this pain from something that was meant to reduce symptoms. I’ve ended up going natural on contraception following this. It’s not the best, but for me I can now measure my health symptoms without side effects of medication being the cause.
I hope you manage to find the best thing for you and hopefully subside. I remember being told I didn’t have endo and being convinced they were wrong, in a weird way upset because I now had pain with no answers. But there will be a resolution, try keep focused and don’t forget that you know your body more than anybody else x
So sorry you’re going through the mill right now. I had a similar experience as you, years of pain although I had 3 children. In 2020 I collapsed and found a cyst had burst through my uterine wall resulting in blood loss. I had 3 more operations following this within 2 months then put on zoladex which was awful. I opted for a TAH privately before my 40th birthday and they found that I had adenomyosis- if I had left it longer I would’ve potentially have a haemorrhage. Anyway, adenomyosis is notoriously difficult to diagnose because it doesn’t appear on scans all too well but this is something to ask the gynae. I had the coil but it exacerbated my pain to a different level and I pulled it out myself. Don’t feel forced into options and go with your intuition.
Please don’t feel fobbed off, I spent so many times fighting my corner but the private surgery was the best thing I had done although menopause is a bitch! 😂
Thank you for your response and help. That sounds absolutely awful, but I'm glad your surgery helped you.
I feel like I don't even know where to go or what to do anymore 😂. I have made a GP appointment but there is a wait till early May 🙈 but I've taken myself off the pill and will see how that goes until my GP appointment. 😊
Wish I could afford private but it's so expensive 😵💫😂. Hope you're okay now x
So sorry to hear of your struggle. I hope you can find symptom relief. I also had cyclic symptoms before and during my period, though not quite as severe as yours. I think Id tried everything for the pain (drugs, diet, exercise, complementary therapies). In my lap, the specialist gynaecologist only found tiny small spots of superficial endo & scarring, in a couple of areas, causing all the issues. One thought is just how specialist was your gynae? Was your lap at a BSGE* accredited centre for endometriosis. Also, you could ask your gynae if there’s a chance they could have missed it? There seems to be some discussion of this in thé literature around endo. Since you show all the classical signs of endo, you could consider asking your gynae to consider getting a second opinion on your case / images from another specialist / specialist centre? They should be able to do that all within their professional networks. You can also request a copy of all your images from the lap & your records, in case you do end up going to a different hospital. *bsge.org.uk/
The one thing I hadn’t tried for my pain - as only found out about it recently - is specialist pelvic physio. I had to persistently ask for a referral for that one.
And lastly it shouldn’t be a case of try the coil before anything else. If nothing else there are specialist pain clinics - though I have no experience of these. But that was suggested to me, as a next step, if I have ongoing pain following laparoscopy.
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Finally Getting Lap (but been told it will show nothing but IBS!)
Nothing found on laparoscopy!
Mri found nothing 
Laparoscopy yesterday - nothing found and feeling hopeless! Advice please 
Had lap yesterday no endo found so confused
