Endometriosis UK
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Hoping for some support. Just been diagnosed.

Hoping someone responds. just want to share my experience! I have suspected that I had Endometriosis for a long time. I took my periods very young, aged ten and ever since have suffered very badly, i never knew my periods were abnormal. I always had this nagging feeling that I couldn't conceive. Call it womens' intuition if you like! Also, keep in mind that i became sexually active at 18, three years ago and after one too many misses of the pill i stopped taking it altogether to put it to the test and within three years of being sexually active and having constant sex with my boyfriend I have never become pregnant, not once, despite having a regular period.

I had a suspected ovarian cyst last November and had an MRI scan a month ago. I was told today that the chocolate cyst on my right ovary has become 6cm therefore it has gotten smaller but now another chocolate cyst of 4 cm has been found on my left ovary. Also, moderate-severe endometriosis has been detected. I cannot get surgery for them and have to just live with them for now otherwise the likelihood of fertility since I am only 21 and mid degree and thus do not want to conceive right now, would lessen if i got the surgery and did not try straight away. I am getting the coil in and in 6 months time there will be a check up done on me by a top gynocaelogist. He will check to see if the endometriosis has lessened or is progressing at a slower rate and if the cysts have become larger/ I will then depending on what they say decide my future. If the endometriosis has thickened I will need to have my surgery and attempt to conceive straight away, it's kind of a now or never scenario. My mother is devastated as am I. I don't think i will be ready for a baby in the next year but I also don't want to lose the opportunity of ever conceiving. This is all quite a lot to digest. Hoping for any support whatsoever. Many thanks.

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Hi, I'm so sorry you're going through this shit, I know how tough it is. Why have they told you you cannot get surgery for your endometriosis? Have you had a diagnostic laparoscopy or anything? given my experiences what your doctor has told you is, frankly, bull and I do feel you aight to seek a second opinion asap.

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Thank you for the reply! Yes, my Mother is trying to urge me to go for a second opinion, she thinks it all pretty vague. I have not had any surgery yet, I thought i would be getting the laparoscopy before the diagnosis could be done but it was through the MRI that the gyno told me of the two chocolate cysts and of the endometriosis which she said seemed at the middle aka moderate spectrum but since the stage can only be detected from the larposcopy i'm not taking this to be in fact. She gave me a choice in the surgery but advised that surgery straight away may not be always best because people usually find they come back straight away after and repeated surgery can build up the scar tissue and so i should go on this pill and in 6 months time i'll be monitored again and depending on that i can decide again about the surgery. I'm really in two minds about what to do. A part of me want's the laparoscopy because i want the cysts gone even if for now and the biopsy done so i know a bit more about what is going on but the other part wants to save the surgery to perserve my fertility as much as possible and so i can try to conceive as soon as i get it and not miss the opportunity. Once again, i appreciate you replying so much.

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In my personal opinion you NEED a second opinion. I highly advise going for the surgery as once the endometriosis is removed it can then be controlled for coming back by hormone treatment. Your doctor telling you surgery may not be best is crap to be honest. If removed in the correct manner the lesions don't return immediately so patients have no need to return immediately. If the lesions are cauterised it removes only the head of the endometriosis. Imagine a shrub, you cut it back and after a while more shoots grow back. Endometriosis that has been cauterised does the same. Now if you were to dig that shrub out it will not grow back. This is the exact same with endometriosis, if the lesions are cut out, they don't grow back so you don't "immediately come back." I will admit cutting out the lesions isn't a cure, it's a chronic illness, but it could be years, even decades, till they do come back. Sounds like your doctor doesn't have a clue about endometriosis.

Hormone treatments DO NOT remove the endometriosis, only mask the symptoms by altering your natural cycle or if you're lucky shrink the lesions a little. I've had two surgeries for it and I've never heard of scar tissue build up being an issue, sounds like your doctor is talking out their arse because they don't want to do the surgery. If you want children I'd also advise going ahead with the surgery and then using some hormonal preventative treatment afterwards. The coil is pretty commonly used, I've had it fitted after my second lap so if it helps me I will let you know! (I'm only 22 and have never had children so in a similar boat to you.) In regards to hormonal treatment if if they're suggesting something that isn't "standard" like contraception please, please do your research. I know it sounds dramatic but some of the more hardcore hormone treatments such as GnRH analogues can really, really mess with your body and be pretty unpleasant to be on. It may also be worth checking if your gynae is an endometriosis specialist surgeon. Here is the link to the list of BSGE accredited centres across the UK.

bsge.org.uk/ec-BSGE-accredi...

If your gynae or local hospital isn't on there you can be referred to one, if they say you can't they're talking baloney. Please please get a second opinion. Also you haven't mentioned whether it not the endometriosis causes pain? If it does what pain killers have you been offered? I'm always happy to help as best I can, I'm not sure if you can email people on here, but if it's possible feel free to drop me a line if you need advice.

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Hi, so sorry to hear you're going through this. It's very hard & all the ladies here share your pain. I always said we would try to conceive at 30, as we got married young and had so much responsibility already. However, at 30 is when I found out I've got Endo, and I'm unsure whether I can conceive now, we can't try yet, as my right cyst was removed successfully but the left one is stuck to my bowel an quite a big size. I do feel upset sometimes thinking "what if we can't have kids" but i think right now my focus is to get this second cyst removed & then see what happens from there. I'm focusing on the fact that someday, hopefully we will have a baby and i will keep that positive mindset.

You're still very young, just don't rush to have a baby if it's not the right time. Things will work out, you just need to deal with the issue at hand first. I agree with the post above, you need a second opinion, it doesn't sound right to me. My right side cyst was 4cm and they we're ready to operate on it even before the left one was discovered.

Don't let any of this dishearten you, surround yourself with a good support network and see if you can figure out how to deal with the problem at hand first. I'm sure everything will work out just fine.

wish you the best!

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Thank you so much for your personal, lovely reply. Life is so full of surprises and just doesn't work out the way that we plan as you've found yourself but hopefully there are still some nice surprises left in store for us yet. I completely commend you for maintaining a positive mindset and I intend to do the same!

You have both made me start questioning the gyno's verdict myself. My Mother was not at all happy and is considering helping me go private because of these doubts. Thank you. I didn't want to second guess her but it was quite vague. Wish you all the best also!

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You're very welcome. I did not even bother with my NHS GP as previously they have always ignored symptoms. I went straight through my insurance to see an endo specialist, but she was also NHS.

She has been brilliant, she really took the time to explain everything, I got all my tests and scans done privately, my surgery date was pushed forward because of the size of my left cyst and I luckily had mine done sooner.

I'm not saying NHS is bad or anything, but sometimes I feel due to the amount of patients they see, they tend to brush of the important stuff.

So even if you have to pay for it (if you can afford it) sometimes it is worth it, just to get a second opinion and someone who will take their time to listen.

Hope you can get someone else to help you :)

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Hey I'm kind of in the same boat as you although I had my first child at 20 and now at 26 I have been trying to conceive my second for 2 years but no joy. I had my first laparoscopy 3 weeks ago and was diagnosed with endo. The doctor wanted me to take hormone injections straight away but as I want to conceive I couldn't. I'm having to wait 3 months to see the consultant to discuss my second surgery to remove endo from my bowel after that I have to try immediately. Like you the doctors have made me feel like it's a one shot deal and then menopause. It's horrible that you have to go through it. Like the women have said push for a second opinion or see about treatment options, you're young and if you don't feel ready for a baby right now you should be pushed into one x

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Please get a second opinion from an endometriosis specialist - not a general gynaecologist or any other gynaecological specialist.... An endometriosis one. From what you've said, you have been given poor advice and misinformation.

I would be looking to have a laparoscopy (from an endometriosis specialist only) to remove the cysts and to excise any endo and free any adhesions, then I'd rely on the Mirena.... But that's just what I'd be looking to do if it were me.

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Hi. Just wanted to let you know you're not alone. I too started young at 8 1/2 and have always had the feeling that I would never be able to have a child of my own (I'm now 42) . Always knew something was wrong and was only diagnosed last month after a laparoscopy when the the surgeon said I I had stage 4 Endo and the chances of becoming pregnant was very slim. I just wanted to tell you don't give up like I did with trying to get the best treatment. I gave up a long time ago going to the doctors about my periods etc now I wish I hadn't. You need to insist that you are referred to an Endo specialist. I wish you all the luck in the world.

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