I am need of some much needed advice and maybe some guidance from you!
I am a 26 year old girl, who was diagnosed with stage 4 endometriosis in February 2015 (day before my 22nd birthday) and had laser ablation surgery in July 2015 - endometriosis was found in my left ovary, rectum and at the top of my vagina. I am aware now that 'excision' surgery would've been best.
I was advised by my endometriosis CNS to go on to contraceptives which I did and have been on ever since. I refused both the coil and the injection as I wanted to still have some control over what I put into my body - and read some horror stories!! I have been on both the combined and POP pills over the years but I'm now at a point where I'm fed up with taking them!
I currently take norethisterone (350 MCG) x2 pills a day (on consultant instructions).
I'm experiencing mood swings, feeling low, weight gain, thinning hair and I'm BLEEDING! I bleed as if I'm having a menstrual cycle monthly and yet I'm taking the pill back to back! I'm cramping, passing clots etc and feeling like a zombie (the pain stops me from sleeping).
So I plan to just stop taking them today! Has anyone just stopped taking the pill? Did you bleed out for ages or did it stop? I haven't had a 'real' period in 4 years!
I'm also very aware of the fertility aspect of endometriosis and wanted to know if it was better I tried now or waited (I'm in amazing relationship with a supportive boyfriend) so we've talked about babies etc.
When I spoke to my CNS about this she simply said you don't have to try right now but she wouldn't advise me to wait too long either - which I found elusive.
My mum is keen for me to try now as she doesn't want me to regret it later on but I don't know.
I don't want this disease to rob me of my heart's desire - motherhood.
But I don't want to be in pain!
PLEASE HELP 😥 (so sorry its so long)
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D1kingr3b
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I was on the pill for 10+ years, they eventually stopped having any effect on my periods and the side effects near the end were awful, no doc paid attention to it possibly being endo. I bled throughout (even though packs were 4 back to back), painful sex, headaches, weight gain, spots, fatigue. It was only when I came off them and realised something wasn't right. Some of my symptoms were from the pill and some from endo.
I think when you stop the pill everyone is different; I had about 5 irregular cycles with heavy periods while my body figured out cycles / hormones again. I think if you read up it often says it can take a few months to a year for cycles and ovulation to stabilise so fertility could be slow to recover - but for some it's all back to normal the next cycle.
You have good support so that's amazing.
Yes excision is best for treatment. You know yourself something isn't right so it may be time to go back to your specialist and ask for a laparoscopy with excision; or they can refer you on - you've had laser surgery and you have endo regrowth symptoms so you can push for excision.
As for the having children, I've had conversations with my hubby about this are here are his questions he asked me:
if you had a child now would you be ready mentally and physically for it?
would you be financially ready and stable?
how would you feel if you had an excision lap in a few months and then see how you feel?
what happens if your symptoms get worse while planning?
what happens if your symptoms worsen while pregnant?
say if you're okay during pregnancy, what would you do if your symptoms worsened after, with a newborn?
would you be okay having a laparoscopy for excision of endo with a relatively young child?
An additional thought; you can ask for an excision lap and a check of your tubes / ovaries - then you'll be more informed of your current fertility state and endo regrowth including where it is and any tissue sticking organs together which may be causing pain / could cause pain.
It's difficult with our mothers wanting us to have children, but remember it's our body, we (and our partner) make that decision, ultimately though some things just aren't on our path, which we must also accept, we need to be strong. I'm not saying we can't have children due to our endo, women still do of course, but being prepared and not being too hopeful is part of being strong. Remember it's not just down to us; men can have problems too!
My answers led me to just wait and see, we're not planning, or preventing, just doing things as nature intended, if things happen then they do, if they don't then we won't feel stressed from all the trying as it could be our timings, or endo. Our thoughts may change in say 5 years. Feel free to have a read of my story, it may help you to see things from a different view.
Contraceptives can help you control your endo symptoms but they will not stop endo, they slow it down, but ultimately excision surgery is needed to remove the regrowth; you'll need to work out when you'd want that surgery. Some women can be on hormones for years and have no problems or symptoms are much improved then there's some like us for whom it hasn't worked.
I know it sounds selfish so apologies if it comes across that way, it's not what i mean; you should firstly focus on you and your health so that you can be at your best when you have a child so you and your partner can be there and enjoy it as much as you can - if endo crops back up later then you'll have been the healthiest you could be for as long as you could be. To have a child / plan for one now; you could be successful on your first attempt but you may still have all your symptoms you have now during pregnancy and after childbirth. I of course hope you're healthy throughout
Sorry the post is so long, hope it helps somewhat x
Hi - you are still young so your comment about having already been on contraceptive pills over the years suggests that you might have been put on them as an adolescent for period problems. It is well documented that this is likely to result in severe disease down the line. The European endo guideline (ESHRE) says at 2.1:
'It has to be emphasized as well that prescribing oral contraceptives in adolescents with pelvic pain without a definitive diagnosis of endometriosis might contribute the well known delay in diagnosing the disease. It has been argued that starting oral contraception in young girls because of primary dysmenorrhea could be indicative of the diagnosis of deep endometriosis in later life (Chapron, et al., 2011).'
So it's very odd that your nurse suggests staying on them now that you have developed severe disease without it being treated. I don't know if she is suggesting it as a 'treatment' for the endo but it will have no effect. Deep disease is mostly dense fibrosis (scar tissue) with very little in the way of endo itself, but the endo that is involved produces its own oestrogen within its own cells in a way that doesn't involve the ovaries so medical treatments that stop ovarian hormones have no effect. It is confirmed in the NHS England treatment specification for severe endo that medical treatment is ineffective with the only treatment being excision (link below).
It's not possible to treat stage 4 endo with ablation since it only penetrates a couple of millimeters and deep endo can go as deep as several centimeters so I wonder what they did. They may have ablated a few minor spots here and there but all the deep disease will remain. You don't mention pain from the endo, but you would expect to experience considerable pain. Excision for stage 4 is done for pain and/or infertility and unfortunately statistically severe disease does have a significant impact on fertility, with significant improvement after thorough excision.
You have been treated totally against guidelines, which surgeons must follow. As soon as you were found to have severe endo you should have been referred to a specialist endo centre in tertiary care.
It isn't an option for a consultant in secondary care, it is a requirement that you are referred to a tertiary centre. They have fertility services so could advise on the issue of trying now or waiting. But bear in mind that the chances of conception with severe endo are low and it could progress further all the while you are trying. If you were successful you would still face what would most likely be a more complex surgery down the line with a child to look after. All in all, given your young age I think having excision first to improve chances of natural conception and stop disease progression would be the best advice. But as said you need referral to a specialist centre where you can discuss it all fully.
This is the link to the treatment specification for severe endo in England:
Sorry to hear how difficult things are for you at the moment with the endo.
I've been on many different pills, took one back to back and still had a bleed every month. Sometimes your body just doesn't agree with them and it doesn't stop your periods. I too have refused the coil, but it was recommended to me as the better option of the lot, how true that is I don't know.
As for the fertility aspect, me and my boyfriend have started trying for similar reasons. I want so much to be a mother, we decided not to wait. Obviously your decision is entirely your own, depends on whether you feel ready for it and so on. But my advice would be not to listen to other people saying you're too young or whatever.
I'd also try and get advice and help from a fertility specialist early on, I think it's after a year of trying naturally you can be referred on.
I know it's the most stressful, worrying and upsetting thing thinking it may affect you being a mother. I'm going through the same...but there is a lot of support so you're not on your own,
The pill didnt agree with me and made me have bouts of depression and anxiety. I still had bad pain but would br spontainious as you dont have a proper cycle. I was on it for 20 years! Came off it age 34 got pregnant straight away. 2 years later finally got diagnosed with endo, and have been trying for a second child for 3 years now. We are going to have to go for ivf now because im older. I have friends older than me with endo still getting pregnant, and others that cant because of it so its impossible to know if you will have problems or not. My advice though is if youre ready now then go for it. And if youre not wait a bit but dont wait too long if you really want a family. All the best with what you decide x
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