Can't cope anymore 😓

As I lay awake and crying for the 2nd night in a row I feel I truly can't take it anymore!! I am 28 years old and have been battling with endometriosis for the past 10 years+ and nobody will admit endometriosis is the cause of all my problems.

Year on year, month on month, my symptoms have gotten progressively worse. Over the years I've been jumped from pill to pill. I've been told I have IBS (which "conveniently" only shows during my period), ovarian cysts (which have never shown on the numerous internal and ultrasound scans I've had), once even being told I had kidney stones (again, only when on my period??) Only last year after a smear which showed irregular scars was I referred to gynagology. I told the first Dr I saw about all of my symptoms; painful intercourse, back pain, horrific period pain, swelling, bloating, prolonged periods (sometimes 2 weeks, with a few days break and back bleeding again), spotting, bowel pain during movements (and I mean screaming excruciating pain!). He conducted an internal and like my smear nurse could see Ectropion (my inner cervix has dropped outside, "causing" (more like adding to) painful intercourse and spotting) I've had that laser removed twice. He explained many of my symptoms being because of this and the rest just 'standard period pains' (he's a man, like he could ever know what that is anyway!!!). So I was booked in to have ANOTHER scan to check for polyps (all clear) before seeing someone again ... New appointment, New doctor! I explained all of my symptoms again and AGAIN I was told "all normal" but was booked an appointment to have ectropian lazered. New appointment .... New doctor. I had my Ectropion lazered and again the standard symptom checker. This time I actually spelled it out (to another new doctor) I am CONVINCED I have endometriosis. He then when into the speil of how difficult it is to detect and it can only be done through a laparoscopy and they didn't like to do this without trying everything to relieve the symptoms first. I wasn't happy with this but was given leaflets about having a coil fitted and the laparoscopy procedure and was to await a new appointment to discuss the next steps IF the laser surgery didn't help. I knew I wouldn't help because my symptoms ARE endometriosis nothing else!!

Anyway, whilst awaiting this 4th appointment I noticed a small spot like lump in my belly button which burst with blood during a period. Thought nothing of it and cleaned it up and carried on. It went after bursting. The following month, another heavy bleed and again this lump grew this time with another along side which was extremly large, swollen and black. The small lump again burst with blood and a few days after my period they started to decrease in size. The following month again, this time 3 lumps, each bigger than the last month however now the massive lump burst and there was blood everywhere!! I'd just moved house so had a new GP surgery. I went along and within a second of my new GP looking at my belly button he questioned if I'd ever been diagnosed with endometriosis? I could have kissed him. Hes 100% certain what is growing in my belly button is umbilical endometrosis Hes written to gynagology and I have an appointment in 5 days time!!

The point of this (very long) post, should I demand a laparoscopy or agree to the coil?? My heart is saying laparoscopy but can't deal with the arguing and fighting anymore!!

9 Replies

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  • Hiya Sam,

    Sorry you have been through soo much, but I am glad you are finally getting some answers.

    I think you should definitely demand a lap, but also look into the official side effects of the coil. Don't just go off what's on here, don't get me wrong I love this site and its a life saver, however everyone reacts different to treatments. For example my experience with the coil wasn't great but I wouldn't put anyone off it because it might work for them.

    If you decide the coil is for you then, tell them you will have it inserted while your under the general anaesthetic having the lap. Two birds one stone!

    Hope you get some answers and relief soon!

    Take care, Holl xx

  • Hi Sam - after all these years of your body screaming endometriosis to deaf ears you are finally on your way but now take the opportunity to drive the treatment process. You may now have rectovaginal endometriosis and if you do have umbilical involvement then you need to be seen by a skilled specialist in the condition and not a general gynaecologist. It will be so important that your first lap is done by such a person. In preparation for your appointment click on my name and have a look at my post on rectovaginal endo and on how to find a specialist so you can put your case to the gynaecologist for referral to a specialist centre - this can be done directly by your GP too. The process is easier if you live in England. Let us know how you get on.

  • Thank you Lindel. I live in Wales so I'm really hoping a specialist can be found.

    I've read your posts, it deff sounds like I could have it. I will speak to gynagology and hope they will see I'm at the end of me tether and agree to find a specialist to help me.

    I will keep you updated xx

  • Omg, poor u X

    Lindle is right, push to see a specialist.

    Hol92 has the best idea, have both!

    I had the coil for nearly a year and didn't personally get on with it, it almost stopped my periods but the pain continued and my moods were terrible. Everyone is different tho, at least try it, if u don't get on with it then have it out.

    Good luck Hun x

  • Thanks Amber.

    Ii know a few people and they have all had the coil removed because it hasn't worked/ been worse. I know its different for everyone but I am willing to try it as long as they are willing to do a lap. I don't want to just deal with the symptoms, I always want to rid of endometriosis as much as I can. I'm going to really try and push a specialist when I go on Thursday. Will keep you all updated xx

  • You poor thing, you've been through so much! I certainly think you should have lap op to see if you have endo- sounds like you have to me! Take care, let us know how you get on xx

  • Hi, fight for a lap, I went to the docters with a endo nodule that was growing in my incision scar, it got bigger more painfull with each period. I was told by one doctor it was a lump of fat. Then after going back and forth they said try the coil it made no difference so then I got referred to gyni I then was given a lap and had the endometrima removed. For me the coil did more harm than good but it may be great for you but after 30 years of begging doctors to help me just having that lap and then knowing I had endo in several areas empowered me in a funny kind of way I knew then what was wrong with me and Now I don't feel like it's all in my head and that's how they made me feel. I have now pushed to see an endo specialist and I'm having a lap on the 6 th jan to cut endo away rather than just burn over it . I was not prepared to be fobbed of 30 years is too long to be told this pain is normal or I'm just unlucky. If it was not for this site and amazing women I would not know what to do or how to go about it. Only you can decide what to do but let that be your choice not just whats easier for them they do not walk in your shoes x

  • Hi all.

    I had the hospital on Thursday and saw a new doctor. She read through all my notes and decided the next step was a lap as I've been back and forth every few months for a year with no change.

    I then showed her my belly button (as my GP letter had never arrived?!?) She looked at it and straight away told me I have endometriosis. I burst into tears! After all this time, someone has finally admitted it. She told me it can only be diagnosed whilst inside and they see the cells but there is no doubt that I have it.

    So I'm booked in for a lap in Feb, the earliest they could get me in. They will deal with as much as they can whilst inside however they can't go through my belly button as they would normally because of my umbilical endometriosis so they are going to create incisions in the top of my stomach. They will try and deal with the umbilical but it's likely I will need a second operation to have my belly button removed. Whilst inside, they are also going to complete a dye test on my tubes as my partner and I are keen to being trying for children next year so she said whilst inside they will look to see if there is any damage and we may gave problems. I really hope not but am not trying to think about that now. I'm just more than happy that finally I have the diagnosis I've been fighting for and they are moving forward with it.

    Thank you all for your messages and support, it really helps. Keep your fingers crossed for me and I will keep you all updated xxx

  • So Sorry to hear about the hell you had to go through! I didn't have all the symptoms described but was offered a surgery straight away because they never know how bad the endometriosis might be. Whatever you decide (hopefully with a help from a nice and supportive doctor this time), I hope that your suffering will be soon over!

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