Hey, I recently got diagnosed with endometriosis (like literally yesterday). I originally went to A&E with right abdominal pain, which a CT scan later showed was a large cyst, I had my laparoscopy yesterday and was diagnosed with this condition. Truthfully, I had never heard of it and the thought of having it is kinda scary because i'm only 22 years old.
I have been told I need to start treatment on Saturday (in 3 days) and I'm going to be having an injection called Prostap which will supposedly make my body go into some sort of fake menopause.
I don't know how my endometriosis is then going to end up getting monitored, so it would be pretty cool if someone could give me some in sight in to how exactly your progress to certain treatments is monitored? I had a few minor difficulties with my laparoscopy, which has resulted in me having to use a catheter for 4 days. So I am really hoping they don't need to do another laparoscopy in 6 months time to see how my womb and al that looks!
As you can imagine this is a really emotional time for me, and I'm really over whelmed, so any sort of insight into this condition would be fantastic, and any sort of information on how I am going to be monitored would be really great too!
Many Thanks!
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csimpson1
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It's a long hard journey and sorry you've started out so young. They usually see how you're doing by measuring pain levels. Prostap will hopefully stop any more growing but it's a rather inexact science as it depends where it is.
You will at some point probably need another lap to have endo excised - this is best treatment compared to ablation/diathermy.
Have a look for Lindles posts on here as she gives great advice on treatment pathways and she knows loads about endo having suffered for a long time without diagnosis. She also runs a Facebook page where you can chat to other ladies and discuss surgeons as you will need a good bsge surgeon on your journey.
Hey! Thank you so much for your reply and your advice! I live in the UK and I am under a private gyno / fertility doctor! He seems to know what he is on about I think not too sure what a BSGE is though! X
They are endo specialists and whatever any other gynae tells you you need to be seen by a specialist. They are all NHS so your gp can refer you now you have a diagnosis. If you have private healthcare best to get the NHS referral and then go see one of the specific gynaes as that can speed up your NHS referral but your better placed in the clinic as they have all specialists in one place. Good luck.
Hi there, I got diagnosed last year after exactly the same thing happened to me. I'm 24 and had the cyst removed but at the same time they got rid of the endo. Before my surgery I got the mirena coil which is suppose to keep endo at bay. After the surgery and mirena, I have noticed a significant change. I get no periods and much less pain. Like Marcia71 says doctors will just monitor you by the amount of pain your having. You hopefully will be referred to a pain clinic.
Hey! Thanks for your reply I heard that they put the coil into you while you are awake, and it feels like labour (never had a baby so terrified about that thought) and that it stays in for 5 years? Is that true? I'm thinking of getting it if this pain doesnt hurry up and dissapear. Havent been to a lecture since the 12th December so starting to panic xx
I've also not had a baby so I cannot compare. However I'm guessing labour is much worse because it is prolonged pain. I was awake when I had the coil put in and I was numbed which was scary but the numbing helped. However, I did have cramping the whole day afterwards which was sore but nothing I wasn't use to. I was a little traumatised by the experience but I have friends that weren't bothered at all (they're not squeamish or bothered by needles). At the end of the day it was worth it. No period and less pain. After more than 10 years on the pill which did f*** all; the mirena felt like a godsend. It does take 6 months to settle so if you want a baby anytime soon it's probably not worth the hassle. ALSO try not to worry about uni. Your health needs to come first and this is what special circumstances requests are for. Endo is persistent and exhausting. Look after yourself. Xx
Hi depends on what stage your endo is at i would also see if u can be refered to a bsge centre u can look on the website to see if ur nearest one is but from my experience excision is usually the best way to remove all endo Iv put up with endo for 8 and a half years but look up lindies post on treatment pathway also join her Facebook group she is lovely and will give u tons of advice on how to go about being treated to Goodluck hunni xx
Hey! Thanks for your reply, you must be an endo expert! I'll look up her facebook page and have a little read through everything. I'm in the UK and currently under a private gyno/fertility doctor, not too sure what a BSGE is but i'll look it up x
Hi, If you are in the UK, then you are lucky if they did no removal as yet, just a diagnostic lap. Also if the prostap works for you, perhaps the growth of the Endo will be halted. I would talk to the advisors at 'Endo UK' they host this page, and there is a link to their website at the top of the page, with email and phone contact details on the site. As Marcia 71 has suggested, I would also check out Lindle's post on here, and her Facebook page - where people can name medics and Centres (we can't on here as it could affect 'Endo UK's charitable status). You also need to get hold of copies of all reports, test results and any letters etc between your GP and the laparoscopy team - as well as any tests the GP has done - as these will help in your discussions with 'Endo UK' etc.
Removal of the Endo is the best long-term solution, but it is best done by a specialist team at a BSGE 'Endo Specialist Centre. Your GP should know the protocol for a referral to a BSGE Centre if that is needed in the long run, if the Endo worsens. At the moment it depends how they have 'staged' your Endo.
It is good that none was removed from you this time, as most of the problems on this site are from women who have been treated by general gynaes who do not have the skills of Endo Specialists. Badly or partially removed endo causes scar tissue and adhesions which can make the situation worse if unremoved endo grows back.
I know this makes it sound scarier than you might have hoped, but you may well be fine with the prostap (I myself was fine once I had a mirena coil). Also, if no removal was done at your lap, then that is also good, as if removal is needed at a later date, you can go to a BSGE Centre and get the best possible treatment.
Hope this helps, sadly endo is one of those conditions where we have to become our own best experts, but there is loads of support on here, and do check out Lindle, and 'Endo UK'.
Hey! Thanks for your reply I didnt actually go through my GP for this, I went to A&E with suspected appendicitis, as I am a private patient (I dont usually use the NHS) I went to a private gyno/fertility doctor who did my lap and has sorted me out so far!
I didnt have anything removed as I literally had the lap done to remove a cyst! I had my prostap yesterday and i'm hoping that will be enough for me, but im a newbie and still so confused by all of this! Hopefully i can become my own expert in time xx
Hi I was 20 when I was diagnosed and I had prostap injections for nine months. They tend to monitor you dependant on your pain levels. After prostap due to some issues I had to have the mirena coil. I'm having a lap in two weeks so I'm lucky I've been 9 years without having anything else done. Wishing you a speedy recovery x
Hey! Thanks for your reply Did the mirena coil hurt? And does it help? I heard its put in when you are awake and you have it for 5 years! I might look into it if this injection doesnt work x
I personally found it very painful when they inserted it I haven't had children. It did help for the five years I only had a very occasional flare up and basically no periods I only had issues with it right toward late the end and it needed to come out then x
No that's fine I wish I had known someone when I was younger that I could ask. It was definitely worth the pain with it being put in. I don't remember much about them taking it out I don't remember that being painful I felt it was more like a smear myself and over very quickly. Yes the coil doesn't affect fertility I haven't been able to conceive myself but I had so much pumped into my body for so long it's taken a while for my body to get back to normal xx
So sorry you are so young and going through this, positive you are diagnosed and private too, a nice luxury in our current climate.
Just wanted to add I had the Marena inserted in 2006, I can only remember that afterwards for a good few days it was like dull back ache and cramp like a period - you could go with 2 ibuprofen in you if you choose to go for it?
Its a great long term solution and benefits of contraception and no to little periods.
The settling in time should be 3 to 6 months maximum.
Im pointing out though that many of us endometriosis or adenomyosis of the womb sufferers or tilted cercix ladies couldn't get comfortable with this device inside them. I bore it 8 months aged 26, it wasnt going to settle, It didnt horrify me on insert, Ive had an induced labour with vaginal pessary it was MUCH more yukki, With the coil, I had shooting pains down my legs daily in work, radiating pain and was on painkillers all day every day but I wanted it to control my bleeds so badly. I was in so much pain I just booked in and a family planning nurse took it out after checking it was sitting at a perfect position its strings etc all visible to her. I couldnt have intercourse either as it was too painful. Think my partner could feel it too and bumping off my cervix always hurt during intercourse regardless of a coil.
All Im saying is you know not to suffer for 8 months like I did. If its unbearably painful have it removed. Again, afterward the spotting and period style cramping. Not painful to remove, I rememver coughing for the nurse! Being on this site a long time it is a shared concern of some of us sufferers, unfortunately it did not suit all.
My body saw it like a foreign invader and rejected it.
There are other options to discuss, definaty go to the BSGE endometriosis centre the links above are how you get one locally.
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not too sure what a BSGE is though! X
Womb tilted to the right Mirena Coil? 
surgery for bowel and womb stuck together by endometriosis 
19 Years Old With Endometriosis- My Struggle.
UPDATE. Thickening of the womb at 51. Ultrasound said ovaries normal but now biopsy needed. 😔
