Hey everyone, I have just joined this com... - Endometriosis UK

Endometriosis UK
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Hey everyone, I have just joined this community.

rebecca14
rebecca14

I have been suffering with pelvic pain for 3 years now, it could possibly be due to having endometriosis, but the only way of a diagnosis is the op(which is apparently too risky for my age). So I am trying several things and at the decision making process...

16 Replies
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Hi Rebecca! Welcome! I've only been here since April so I'm relatively new too, but don't worry, you'll feel very welcome here and usually people can answer your questions or have shared your experience. I'm waiting for my first laparoscopy too. Do you mind me asking how old you are as to why it's risky for you? X

Hi, thank you! I am 19 years old. Every specialist has a different opinion on whether I should do the laparoscopy or not. They are going to give me a pill called Cerelle, which apparently stops endo from spreading as it puts it to sleep, stops ovulation, so your ovaries are also asleep. This is to help pain and any further damage. I only got told this a week ago! Then when I want kids I should do the lararoscopy if I am finding it difficult to become pregnant in the future. I guess everyone's case is different, as I haven't had anything show up on my ultrasound scans. I hope that helped with your question x

aimee22
aimee22
in reply to rebecca14

Hi Rebecca. Like you, i had lots of consultants telling me they weren't sure about doing the laparoscopy because of all the risks etc. I then saw a specialist who told me that yes, i do need to have a lap, as it is the only way endo can be diagnosed. He was actually unimpressed that i hadn't had one or been booked in for one. All i'd had were ultrasounds and CT scans. A small ovarian cyst showed up on my ultrasound scan, but he doesn't think that is related to my pain as women get cysts all the time which cause no pain, it's just a coincidental finding. I finally had my lap two days ago. I was very groggy in recovery and the surgeon came over and said that he found 'a hell of a lot of endometriosis' and i've been diagnosed with severe stage 3 endo. I can't tell you how relieved i am to finally have a diagnosis. Even though i'd mch rather not have it! I've know all along that it was endo, but i was beginning to think they the doctors weren't believing me. My advice would be just to keep pushing for the lap. You are entitled to ask for another consultants opinion. I really don't understand why they don't do the laps sooner. They keep banging on about how it takes on average 8 years to diagnose endo. Surely it would be a lot sooner if they got on with it and did it! Sorry for the rant there! Good luck, and like i said, keep on at them. Xxxx

rebecca14
rebecca14
in reply to aimee22

Hi Aimee, thanks for your message. I am able to do the op if I wanted to but the previous specialist recommended me not to. I know it is the only way to diagnose but I think the specialist was saying that she would assume it is endo. What is the purpose of the op? I understand it treats it, but wouldn't I do that around the time I want kids. I have always thought to do the op until the specialist mentioned there was a pill that stopped endo from growing. But that doesn't really make sense because why would people need to do op's several times, unless is just slows the process down...Thanks for your message, I am just curious, I need to know what the right thing to do is . xxx

aimee22
aimee22
in reply to rebecca14

I think the reason they dont like to do the lap is because it can cause more trauma inside which could make endo worse. But dont quote me on that! I was put on the cerazette pill too but my consultant didnt say anything to me about it stopping the endo growing, she just said it will stop me having periods and therefore ease the symptoms a great deal. That hasnt been the effect though. I still get pain so bad that i've been admitted to hospital and i've still been bleeding. Which is why i was sent to the specialist and then it was decided to do the lap. I think it's just a case of trial and error. One thing that doesnt work for me could work for you and therefore why put your body through the surgery. One thing i would say though.. Is to give pills etc a chance. Like 3 months or so. Then decided if they're not working. And if not.. Consider the lap. I'm so glad i had mine as it's finally got me a diagnosis. But everyone is different. And i was warned before hand that there was a high change the endo wouldnt be detected. Hope that all made sense. Feel like i'm waffling! That'll be the morphine! Xx

rebecca14
rebecca14
in reply to aimee22

Oh okay I see. The specialist tried to scare me off I think, she told me some negative things that happened to people that had the op. Oh okay I see. So do you think the Cerrelle stops ovulation? and if so, would that help with the pain or endo spreading as much. Okay, well I guess I will the Cerelle, and ask the specialist if that pill actually stops endo from growing. Otherwise I might need to do the op, rather than wait to see if I find it difficult to have children in the future. Thank you for the advice. Ha, it's okay, it know what it is like to be high on pain killers lol! xx

When did it all start for you then?how old were you when you first had the pain etc?

Thanks x

aimee22
aimee22
in reply to rebecca14

Well i started my period when i was 14 and they were so heavy and my cycle was all iver the place so i was out in the pill. I was on the pill up until about a year ago (i'm 23 now, so about 8 years). Since coming off the pill my periods were unbearable. The pain was me off work for a few days, and i was bleeding so much. My GP told me not to worry, it was just because i'd recently stopped the pill. But it didnt get better, only worse. It wasn't until jan this there that i experienced paun all the time. Horrendous pain. They initially thought it was my appendix (i told them it wasn't!) but then they ruled it out. It was only at the end of fed that someone finally mentioned endo, and everything started slitting into place. Like all my other symptoms etc that i hadnt thought much of at the time. My consultant thinks being on the pill for all those years just masked the pain. So initially i was put straight back on it, but because i was still bleeding weekly after 10 weeks the decided to do the op. Really, i'm very lucky as it has been 5 months of pain for me and then i was diagnosed with severe stage 3 endo. For some wimen it can take years and years. Dont get me wrong, these past 5 mobths have been hell. I've been admitted to hospital 12 times, had to deop out of uni and lost my job due to time off.. But thinking what some women go through i do feel lucky. Look.. I'm rambling again!!

What are your aymptoms etc and how long has it been going on for you? Xx

rebecca14
rebecca14
in reply to aimee22

Oh okay, yeah it is difficult isn't it. Especially when you seem unreliable when it actually isn't your fault.Do you find you are tired a lot? I when through many stages of working, then loosing my job due to being ill until i decided I couldn't do it anymore. So I have been studying, even though that has been difficult due to pain etc, i wanted to keep myself occupied. Also the teachers are more lenient than employers. It has been quite a difficult few years as health effects everything. I don't know what I would have done if I didn't have close people caring and praying for me. I have been christian for a few years now, so it goods to have the support of the church as I don't really see my family. It must have been a difficult journey but in a sense good finally having a diagnosis. I think you are doing great, staying positive.

I have copy and pasted this from my profile lol very long to write.-Hi, I am 19 years old and I have had pain for 3 years now. I was on the implant for 3 years before this time, but on the third year is when it all started(which apparently is when the hormones aren't as strong). I had severe pelvic pain, spasms and cramps. I didn't have periods during that time due to the implant. This all continued until I decided to have my implant removed to see if it would help my pain. Because I had the implant removed, my periods then begun, which I found to be heavy and very painful (my periods before the implant were very light and not painful), therefore my pain became worse. Since then I have been on very strong painkillers and I have tried various contraceptive pills to see if the pain was hormone related. Some of the pills made things worse, so I sort of gave up on them. I have had tests and ultrasounds etc but nothing has shown up as abnormal. I see a gynecologist regularly, some not so helpful. My symptoms have increased and become more regular. I was going to have the op as that appears to be the only diagnosis for endometriosis(if that is what I have). But I have been told by a specialist it is risky for my age, so I am in the process of starting Cerelle Pill which stops ovulation all together and apparently puts endo to sleep(which stops it from spreading). She recommended that I would only have the op when I decide to have children if I am finding difficulties to get pregnant. So let's just hope the Cerelle works.. I guess something I find difficult is that I don't actually know if I have endo..

Haha, don't worry, this message is longer than yours :s xx

Hello and welcome - I am fairly new to this too, but have been (and still am trying loads of things!) If you have any questions you are welcome to pm me! X

rebecca14
rebecca14
in reply to Mitch15

Hey, thank you! I am too and I will do thanks, you are welcome to pm me too x

Hi Rebecca,

You are not too young for a laparoscopy. Girls as young as 14 have had laparoscopies to diagnose including the Endometriosis UK young ambassador Alice. She has also just had a treatment lap aged 17. She has a blog and this is the first post back in January endo365.blogspot.com.es/201...

There is a risk of post operative adhesions forming but that risk is present no matter what your age and is balanced by the risk of endo getting worse if not surgically treated.

Cerrelle/Cerazette is a contraceptive pill. It is a progesterone only pill often called a POP or a minipill. It has no oestrogen. Endo is an oestrogen dependent condition and often occurs when oestrogen is high relative to progesterone. This will not 'cure' you of endo but at best keep your symptoms at bay and at worst cause side effects or simply not work.

Being too young is not a good enough reason. Are you with an endo specialist or a general gynae?

rebecca14
rebecca14
in reply to Brownlow

Hi,

Thanks for your message. I will take a look at the blog.

What is post operative adhesions? How would this form? That is what I originally thought, I thought that the sooner I do the op the better. Otherwise it could get worse and create more damage. Having always thought this, I was surprised when the 'general gynae' said that the Cerrelle pill would help as it stops ovulation which puts endo to 'sleep'. Having thought of this, wouldn't everyone have one op then have the Cerelle, or just have the Cerelle and do the op if having difficulty becoming pregnant. Do you think the Cerrelle could slow down the process of the endo spreading/growing?

Thanks

Brownlow
Brownlow
in reply to rebecca14

It is not known why or how adhesions form after an op. An adhesion is basically scar tissue that can start connecting internal organs together. Not everybody gets adhesions. Endo can create adhesions all by itself.

I guess that your gynae has weighed up your symptoms against operating. However, if this is the case, be aware that severe endo can often have lesser symptoms than less severe endo. There seems to be no correlation. Also be aware that the pill will not reduce the endo that is already there but hopefully halt its progression. Once you stop the pill the endo will return. The problem is that progesterone treatment does not always work and the endo can carry on growing. Also it might appear to work at first but then fail so watch out for that. Many women have the op to remove endo and elect to have a mirena coil fitted to keep things at bay and that can work. This does not suit everyone though.

Try the Cerrelle and see how it goes maybe.

rebecca14
rebecca14
in reply to Brownlow

I see. It's confusion, because I don't have a set gynae, so everytime I have a different specialist with different views and opinions. Some say lets book you in for a op and others say no you shouldn't do it! Also with endo, when do people usually have the pain, just during periods or after time does the pain become more often which means the endo is getting worse. Because I now have more symptoms and more regular than before. So it is true that the pill stops endo, I know it doesn't remove it, but does it stop it from spreading/growing, if so then doesn't everyone with endo go on this pill instead of loads of op's? Or is it that the pill only stop endo growing for some people...

Okay, I will do.

Thanks, help much appreciated.

How do you know so much? What stage are you at?x

Brownlow
Brownlow
in reply to rebecca14

I don't feel I know that much at all. I'm just an opinionated person! Diagnosed 7 years ago with stage 4 endo, large fibroids and rectovaginal (RV) endo. All removed in 2 laps. Forgot all about it for several years. Diagnosed again just before Christmas with...large fibroids, endometrioma and just recently told I have RV back again. Major laparotomy required to remove everything.

I am currently exploring the do nothing scenario when it comes to western medicine and am trying all sorts of other things instead like changing diet, juicing, giving up gluten, alcohol, dairy and sugar (occasional treats allowed), walking, meditation, acupuncture etc. etc. This route doesn't suit everyone though.

7 years ago my situation was too advanced for pill or coil to have any useful impact. The coil has been suggested but for now my preference is to try to rebalance my body without resorting to drugs yet. I believe the body has an amazing power to heal itself if you support it in the right way. But I accept I might be on a hiding to nothing! Worth a try in my book!

Have you had any ultrasound or MRI scans? Endo doesn't always show up, just the nasty big blobs like the endo I have.

I wish there was one pain pattern that was common to us all as it would make endo easier to pinpoint. The thing is we are all different when it comes to location, type and timing of pain. I hope you find something that works for you. x

Oh okay. Yeah I am christian and I believe in healing. So I am just praying for myself. I have had ultrasounds but no MRI as they think there is no point as they are assuming its endo. I know, its such a confusing thing. Thanks for your help x

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