Hi Guys ๐๐ป I'm Charlotte, 27 years old and recently been diagnosed with Stage 4 Endemetriosis. I've now had my follow-up appointment from a Laparoscopy and Salpingetomy that I had in June 2023 and had the following options from my practioner; 1. Try and have a baby naturally/IVF 2. Have a tablet to have a false pregnancy 3. Start my menopause.
Luckily I've been in a lengthy relationship with my partner of 6 years and ofcourse a family was on the cards but not so soon... was supposed to have ๐ this First.
I would be interested in other people's stories and experiences with the illness. I have good days and extremely bad days, I just don't want to make any hasty decisions or have regrets later.
There's limited information on Endometriosis and all I seem to be getting from the doctors is TRY FOR A BABY ๐ถ. I don't quite understand if I can get pregnant and reach full term 'naturally' what this will solve ? Is it not just delaying the Inevitable of having a full hysterectomy ? Or is Pregnancy the CURE?
In regards to Pain management, I find the medication ๐ Cocordemal 90/30 effects me terribly although they manage the pain, I worry my partner with the side effects (he thought I overdosed on Thursday ๐คฆโโ๏ธ) are there any other prescription drugs that I can try too dull the pain? Teas/ special diets etc...
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CharlottePlant
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Hi there, I'm not sure if I can answer all your questions, but I'll share my take on why they might be pushing for you to get pregnant.
1. Pregnancy prevents menstrual cycles and it can reduce the growth of lesions (hence why many therapies for endometriosis include a mini pill or hormonal treatment)
2. Endometriosis affects your fertility and likelihood of getting pregnant, the younger you are when you start trying the more likely you will have a better outcome as you have a higher fertility and chance of falling pregnant. IVF can negatively impact your Endo symptoms and size of lesions.
3. If you wait longer your Endo may progress to the point where your fertility may be severely compromised, for example if they have to remove an ovary, uterus or otherwise.
Pregnancy is a huge decision. It's something that I didn't know if I wanted, but did know that I only wanted to have children if everything was lined up, house, husband, job, mental health support, etc.
I was almost there. But then I lost my job and had an emergency hospital visit for my Endo. Subsequently I was booked for my second Endo surgery. I lost an ovary and fallopian tube (also stage 4) on Monday.
I was diagnosed when I was 31 and now I'm 38 with two Endo surgeries behind me and only a limited number of eggs left, in now one dodgy ovary and possibly non functional fallopian tube covered in scar tissue. I waited too long. I wasn't sure what I wanted, but my decision was made for me.
But your situation is different. You know you want kids. This is the most important thing. I think if you know what you want, don't wait. If you already know that you want kids-- you are ready.
Life is not perfect. Nor is it a fairytale, especially with an Endo diagnosis. It's a huge decision to have children, that you don't want to rush. But the wedding is just a day and the ring is something that you take off when you do the dishes and maybe don't put on very much because you don't want it to get dirty. If you have your person and they want what you want, and understand how important this is to you, then that's what matters.
This is a cruel disease and how it progresses in everyone is different. We don't know what is going to happen on our individual journeys. You already are grade 4. From what you're hearing from the doctors urging and the points I made above, what is clear is that the earlier you start trying for your family, the better likelihood you will have of making that dream come true.
There's always a chance that your fertility may be ok if you wait for everything to line up perfectly for you to start trying. But the heartbreaking alternative in a few years could be thinking "why did I not try sooner?"
Hopefully that is not your case. I don't want to make you feel a complete sense of urgency. But the earlier you try, science shows the easier it will be.
Take care of yourself and best of luck with whatever you decide.
I agree with this. There's actually an Endometriosis UK zoom this evening about pregnancy and endo so that should answer some of your questions. (Think they put up the recording later online too).
Apparently 30% of endo symptoms get better during pregnancy, 30% gets worse and 40% stays the same.
I had a laparoscopy at age 28, diagnosed stage 3 widespread endo. My consultant told me to have children 'sooner rather than later'. Unfortunately my boyfriend at the time had different ideas and didn't want kids for 5-10 years. We broke up a couple of years later. My endo symptoms have gotten much worse since then, particularly since I came off the pill in 2020. I'm 32 now, with a new partner. I'd also love to be married or engaged first but I realise that I don't really have time now, weddings can wait but fertility sadly doesnt.
I've been with new partner for 3 years and after trying to get pregnant for almost a year we've paid for fertility tests and I'm starting IVF soon. Would I have avoided IVF if I'd have started trying a few years earlier? It's impossible to know. All I can say is that once I hopefully have children I cannot wait to get back on the mini pill or coil, if not just remove my womb/ovaries as I just can't live with this level of pain and chronic inflammation any more. I've given up alcohol and sugar and I eat inflammatory foods and take supplements daily. I've also been doing acupuncture and I wear my oovi TENS machine most days. Sometimes these things help, sometimes they do nothing at all.
FYI I was told that taking ibuprofen in the middle of your cycle can disrupt ovulation, so bare in mind if/when you start TTC.
My mum had endometriosis (it took 9 years for her to get pregnant, but IVF was in its infancy then) she was diagnosed with blocked fallopian tubes age 28. She said her symptoms disappeared in pregnancy and did not return after she had children. But again, its a bit of a lottery with this.
I'd also bear in mind that if you start trying now and things don't happen then it can take a while to get seen by NHS (waiting list is 8 months+ in my area just for tests). However if you pay for tests yourself (approx ยฃ300-1000 depending on what tests and where) it should speed things up dramatically as you already have a prior diagnosis of severe endometriosis and you will still qualify for free round of NHS IVF. Some people get pregnant naturally with endo so of course there's also the possibility it will happen easily and fast for you.
Have you talked it all through with your partner?
These decisions are never clear cut. I've wanted kids for years so would've started trying years ago if my partner had agreed to. But it's obviously one of the biggest decisions you can make, and living with endo pain makes it all the more complicated.
Have you thought about doing some basic fertility tests? You can do at-home tests or at most fertility clinics as that might give you some peace of mind / steer for other factors. For example my ovarian reserve is low for my age (low AMH and high FSH levels) which can be caused by endo so that has further encouraged me to try for kids sooner.
In terms of pain, I found changing to a more anti-inflammatory diet made a big difference to my symptoms. You need to do a bit of experimenting to see if there are particular foods that make your symptoms worse, but for me gluten was a real trigger along with sugar. Adding in plenty of anti-inflammatory fruit and veg helped too. Good luck.
you do seem to have been given a lot of bad and incorrect information. Unfortunately pregnancy is difficult with endo and doesnโt do anything to help progression. Like other hormonal options it will just help some symptoms as it helps inflammation. A hysterectomy is never a cure of endo as endo is cells similar to the womb lining growing outside the womb so removing it wonโt do anything for endo. If you want to learn more about endo and treatment options search this group for posts from lindle. And if youโre on Facebook Iโd suggest joking a group called endorevisited to learn a lot more. Iโll link it below.
Hi All ๐๐ป Thankyou to everyone for taking the time to write there experiences down and reply to me. I've spent the last few days speaking in detail with my partner about the decision we have to make. If I'm truthful my main reservation is the FEAR of failure, All we can do is TRY.
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