So I had my lap a few months ago, during which wide spread endo was found in my pelvis as well as a rectovaginal nodule. it was all successfully removed.
After i came out of hospital i felt so blessed that I was finally going to get control of my body back. I'd always had bad periods, but the symptoms got so severe over the past 3/4 years that they tore apart my life. i was exhausted aaalllll the time, in pain, unable to eat, it was horrible. It got to the point were i was barely leaving the house, dropped out of school, lost most of friends and was really unhappy. I was diagnosed with depression and had frequent anxiety attacks. There were points where i honestly just didn't want to live anymore because the symptoms were so bad and no one was taking me seriously.
Anyway, after surgery I felt so relieved that all that was behind me. The endo was gone and i was ready to start building up a life for myself again without it making me so sick i couldn't function.
Three, nearly four months down the line and I STILL have symptoms. I have recovered from the operation, but my periods have literally not changed at all. Same old pain keeping me up for days on end, same old digestional issues, same old exhaustion. I am absolutely heart broken.
Last week I spoke to my surgeon and she told me that during surgery she noticed my uterus was abnormally large, swollen and discoloured. She thinks it's a sign of adenomyosis. She basically told me to get myself on the pill or another form of hormone treatment to repress it. She wouldn't offer me a hysterectomy at this time because I'm so young and have not had children.
I don't really know what to do. I'm super drug sensitive so i've avoided taking any medication up until now (was on a lot of things as a child and it was unbearably horrible so I am terrified to go down that path again) And I can't really find much info on this disease. I mean, there isn't much on endo but for adenomyosis there is basically nothing out there!
I just wondered if there were any other girls around my age going through the same thing? Or if anyone has any info on the disease they could show me?
I don't know what to do from here. I want relief from the pain so badly I'm considering pushing for a hysterectomy anyway.
Any replies would be so welcome. Thank you.
Hannah xo
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hannah11
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Firstly can I ask, did you see a specialist endo surgeon in a BSGE centre?
There is a lady on here called Lindle, I think she wrote a post regarding Adenomyosis, so have a look at that
I have endo and had a hysterectomy for Adenomyosis, I'm 40 and have 3 children, I was in a alful lot of pain with the adeno, so I do sympathise,
I wasn't seen by a specialist, I had a diagnostic lap in March, and he excised and abated my endo, from uterus, utralsacral ligament, and other, and then in July the hysterectomy, unfortunately I'm still in pain, and have now been referred to a specialist, I see him Friday and been referred for MRI,, and he has given me the mini pill, progesterone only, to hopefully help with pain until MRI,
I didn't really find anything that helped my pain, hot baths heat bags and rest, I'm afraid. I was prescribed morphin sulphate, and I'm still on it, lower dose now,
I do think the hysterectomy has helped massively, but not as much as I was hoping,
I don't know what else to say, there is a endo diet that you could try, I'm going to give it a go after Christmas,
If you have any questions just ask, I'll do my best to answer,
Thank you for replying! I am so sorry to hear you're still suffering post hysterectomy, that is heart breaking ):
I saw Natalia Price who is BSGE certified. She was very good and removed all my endo even in the dodgy places like the rectovaginal septum.
Has the mini pill helped with the adenomyosis pain at all? My doctor actually spoke to me about going on that but we decided against it cos they cause mood disturbance and I have a history of depression so it might not be the safest bet for me.
Good luck with the endo diet! I have a lot of food intolerances so I'm trying to adapt it to fit what i can eat with the help of a nutritionalist who specialises in female reproductive health. I'll be starting right after christmas too.
I guess my only question to you regarding the hysterectomy is the big one: do you think it was the right choice for you? I know that might be qite hard to answer!
I do think it was the right thing, my pain has halved since, so a lot of my pain was obviously due yo the Adenomyosis, which is now cured, but I think the only was it can help for sure is if you have a full excision of endo, which I beleave I haven't had, by pain is now coursed by endo, and I don't no about mini pill only been taking it for a few days, never for the adeno,
so you're kind of the opposite of me - i've had all my endo excised but am left with the adeno! Hopefully your pain will decrease when you get that all removed. I really hope you see results. xx
I am not a diagnosed endo patient but just wanted to put my input on the pill side of things. I feel like the pill either agrees with you or it doesn't. It could be worth trying? Do your research into the best one for you and give it a few months. If it doesn't help as least you can say you tried.
I guess with the pill the worst outcome would be that it doesn't work and i also get side effects. Obviously that would be completely heart breaking. Like I said I'm very drug sensitive and always end up with horrible symptoms as a result of any medication. So i don't really want to mess around with that for months on end if i'm going to end up having the hysterectomy anyway because it didn't work. It just seems like a waste of time. I don't want to keep trying things and being let down. i'm just so tried of this tbh.
Also with adenomyosis the disease is still going to progress, even if i am on the pill. the pill will just slows it down (this is what i have gathered from the stuff i've read anyway) so there is a high chance i'll probably have to have a hysterectomy in the future regardless of weather i go on the pill or not.
Sorry if this message is depressing, I guess i'm in a bit of a bad mindset right now. I'm sure I'll pull myself out of this soon and probably try the pill or something, i just have a bad feeling about it.
I always think go with your gut instinct. I've not had a good experience taking the pill, I did, for a long time! It was only when I stopped I realised how bad it made me feel. Currently, due to the amount of pain I'm experiencing and no diagnosis I'm desperate and will be open to try it to see, but I totally get how you feel.
Have you tried some alternative therapies, not for the pain but to help lift you a bit? I guess it's like grabbing at straws with this disease, my brother has an auto immune disease and it's the same thing; very little helps try and keep positive, go for a lovely massage, facial, whatever boosts you a bit in yourself. Walk on the beach, meditation class?!
Aw thank you for your kind message, you're so sweet.
I am so sorry to hear that you've had bad experiences with the pill
I've tried lots of alternative therapies over the years. herbs, homeopathy, yoga, meditation and a bunch of other stuff that didn't seem to have much of an effect on my pain or anything. however i'm now going to only use practitioners who have had experience with my conditions which will hopefully give me the best results. As for the mental health stuff, i see a therapist regularly which has really helped with my mood in general. Just being able to talk about it all makes a real difference. This christmas i am going to try to relax and enjoy spending time with loved ones which i am sure will lift my mood.
God that must be so difficult for your brother. I am sorry to hear that. There is debate going around about weather or not endo is an autoimmune disease as well. I don't know much about that though.
The endo resolved website is also very good, a lot of the stuff you can do for endo also applies for adeno as it's also stimulated by oestrogen.
Google away at it and if you really want up to date info you could try google scholar to see if there's any recent research on adeno. I would caution though that everyone presents differently and there's limited funding for research into these sorts of diseases so just because a website says something does not mean it will necessarily apply to you.
Firstly you are only a few months after pretty serious surgery - it took me 6-12 months after my most serious surgery for me to feel better and to begin to build myself back up - give it time.
I would definitely recommend getting onto birth control (microgynon 30 worked for me) or hormone injections to try and suppress things. The reality is that you, like me, will probably some day have to have an early hysterectomy to get rid of the adeno symptoms. However try and put this off as long as possible - as there are a whole host of other problems that can result and obviously it does rule out having kids naturally.
Re. Fertility - a lot of women have adeno and never know that they have it, the only way to definitively diagnose it is by cutting into the womb to remove some (risky) or by analysis post hysterectomy. As with endo it doesn't dictate your fertility and the stats aren't always right.
For me stage 4 endo, and adeno - we were preg 3 times in 4 months of trying, 2 early miscarriages but baby doing well now. Risk of uterine rupture increases the longer the adeno is left (it progressively destroys the muscle tissue which needs to function normally and stretch in pregnancy) so whilst I wouldn't say run out and preg now, bear this in mind.
I know it's frustrating to not have an instantaneous miracle cure. Endo is a heavy rock of a disease - keep chipping away at it to see what med/natural therapies and lifestyle changes work for you, it will probably be a combination of a number of things that works best x
Thank you so much for replying, everything you said was very helpful and it’s so good to hear from other people with the disease who are doing ok!
I’m so glad birth control worked for you. I’m struggling to actually find one that I would be compatible with due to other health problems as well which is making things quite hard and causing my nervousness about the situation to grow. But I’m working on it. I just feel such uneasiness about it, but if I need it, I need it.
Oh my god I am so sorry to hear about your miscarriages. The psychological impact of that must be so difficult, I’m so sorry you had to go through that. I really hope you are ok. But ahh it is amazing that you have a baby now!! What a blessing. I’m glad they (and you) are doing well. How old are they now?
And nooo I’m nowhere close to being ready to have children and I don’t plan on having any in the near future. It would be sad to have a hysterectomy and remove my ability to have children, but to be honest if it gave me relief from my pain and helped me get a sliver of my life back I think it would be worth it. It’s sad that I am at that point, but there you go. Obviously I’m not making a choice now but I’m thinking about it all the time.
I’ve never even heard of a uterine rupture before… I did quick google just now and it seems horrible. Do you have any links to research or articles I could read about how it is more likely to occur in adeno suffers? I’m absolutely horrified to hear that.
I like what you wrote about endo being a heavy rock of a disease, and you have to keep chipping away at it to see what med/natural therapies and lifestyle changes work for you. I wrote it down to remember when I’m feeling sad and overwhelmed. Im so blessed to be able to talk to other women like you who know how I feel and can share advice and tips. So thank you.
Also you mentioned some of the problems that can arise from having a hysterectomy, can you tell me more about that? To me it’s just an abstract idea so I don’t know much about it, so it would really help to know more.
Hannah, I'm really happy to help. I remember when I was diagnosed with endo at 24, confirmed at lap when I was 25. I felt completely overwhelmed, it was so hard to find commonality with my peers as they were pretty healthy and able to do so much more than I was.
Think about it this way, everyone has their own share of **** to deal with in life, you're just getting a helping of it earlier on. This is rubbish in one way because it's pretty tough, however you learn personal strength, empathy, determination, flexibility.... So many things that are useful!
Lots of people cope with things like diabetes, asthma, ms etc etc. Endo is a bit like that, it isn't going anywhere, but with time you can turn that heavy old rock into something you're proud of - ie. Overcoming adversity and persevering to get effective treatment, being strong to achieve your goals. It becomes quite the sculpture!
Any time you feel like it's too much, talk to someone or post what's worrying you. Keep a diary and write it all out, especially when you're frustrated. Instead of thinking 'I can't cope' Think 'I am persevering, I'm working on coping in a better way'
When you're really sore take it as your cue to rest - allow yourself and don't beat yourself up about anything that has to be set aside - put yourself first.
Re. Birth control, I know it can be aggravating in the short term and disruptive on your emotions etc. if a pill or treatment doesn't agree with you - the good thing is with a pill it is out of your system pretty quickly and there are lots of other options to try. In the long term keeping endo at bay and any damage to a minimum is key.
Baby is due in summer, just at the end of first trimester, mc were both very early, it was tough but we got through it and very excited with this pregnancy now!
Re. Hysterectomy - it is a definite cure for adenomyosis but not necessarily for endometriosis as small implants can be left behind even when the womb is removed. If they leave your ovaries (as they would if you're under 40 more than likely) you will still produce oestrogen and thus the endo will proliferate again. So really thinking of a hyst as a gift from the gods isn't accurate. Though in a lot of cases it can help.
Here are the negatives from what I know... If they remove everything you will go into menopause immediately, if they leave the ovaries you will be more likely to go into a premature menopause.
Menopause is not fun - I've had it twice induced with hormone injections - yes I was out of pain, but had hot flashes, put on weight and was so tired - no get up and go, really didn't feel like myself!
Early menopause puts you at increased risk of osteoporosis and also cardiovascular issues/stroke etc. My mum has osteoporosis and so far this year has fractured her pelvis, shoulder and broken her ankle in 3 places requiring major surgery - all from very minor falls. My friends mum has just had a hip replacement in her 50s.... Here's a few links
So having a hysterectomy is a pretty massive decision. It could change your life choices/health enormously. You're really only starting to find out more about endo/adeno and are probably in a bit of shock. There are a lot of things you can do that could improve your life so much without resorting to drastic measures.
The diet you're starting could make a big change, as could things like acupuncture and other alternative therapies (see endo resolved website), also seriously I was like roadkill after partial bowel resection to remove rectovaginal nodule etc. So really if you are feeling down, tired, sore and fed up still a few months on - that is all pretty normal! Time to work this out is what you need.
As for the risk of uterine rupture in preg - believe it or not this is a risk with some women who've had caesareans or other surgery too. And overall the risk is minimal, the point I was making is that the more surgery you have and the longer you wait the more troublesome things can be. So maybe aim to have kiddos the right side of 30 if that's what you want.
Since I was diagnosed thoughts about hysterectomy, kids and fear of the endo unknown have been in my mind. I became quite the Google fairy - have folders of info as a testament to this!!! No matter what the research says remember that endo isn't widely studied comprehensively and every women I've ever known with endo/adeno has a different story to tell.
Do what you need to do to relax and take things day by day, week by week. You will learn to manage this and find what's right for you.
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