So I’ve had Endo since 2019 and after covid had no option but to have surgery because the pain was unbearable and i do not have a high pain tolerance. I was missing out on so much my career, relationship and social life, it was all I could do to get through each day.
After the surgery my pain level is acceptable I can manage it, however the bleeding is so much worse 3 weeks bleeding sometimes more until i get a break. After seeing my consultation that carried out the surgery HE suggested I get pregnant or have an hysterectomy, I’m 23 years old and wanted my career first and also I’ve heard having a baby doesn’t always help and can make endo worse.
Thoughts please. 🙏
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Lola-cat
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hun ur way to young for a hysterectomy it is a huge decision… I personally am 32 and in the same boat I signed up for it myself but now I am thinking if I should really have a hysterectomy or not …
I think my biggest piece of advice would be to not get pregnant just to reduce the pain - that is not a good reason to have a child and I wish doctors would stop saying stuff like that. If you do decide to conceive then make sure it's something you actually want bc it's a big commitment. If you think you might want children in the future, maybe you could look into freezing your eggs, adoption etc. as a means of having children?
I feel like the doctor gave you two very extreme options there as well - I'd only consider these if nothing else helps the pain. I'm 24 and if I was offered a hysterectomy I would probably do it, but I've already made the decision to not have children so maybe that's an easier choice for me. I'm not saying that to sway you one way or the other, just do what you think is best for you! Best of luck to you x
They're two extreme options, annoying it's always men making these kind of suggestions. Easy for them!! I hope he's trying you on hormonal options first (coil etc)? I wouldn't do either option at your age, although I'm sure the bleeding is awful for you.
I agree with everything that’s been said here. They are 2 very extreme options. The problem with a hysterectomy so young is that it’s permanent. There’s no going back. I found that my first pregnancy did not change my level of Endo pain. In fact my second didn’t either. After 3 pregnancies and 3 lots of breast feeding I finally have some relief. But it’s different for everyone. I wanted to conceive, couldn’t get pregnant and was in a lot of pain when I went to see my consultant and so my direction was more clear. But I was 27 years old at that time. Good luck, please don’t rush into any decisions or be persuaded by consultants for what they think are quick fixes! Xx
As people have said that's two extreme options!I have had horrendous periods all my life and pain where pain shouldn't be, but put up with it.
At 37 I reached my limit or what I could cope with already pretty much knowing I must have endo. I then got pregnant which brought about all the pre period endo pain and went to the doc.
She said I most likely had endo but had a scan incase baby was growing in my tubes.
Anyway being pregnant did ease the endo and I had about 4 years of less pain until it built up again. I've now (at 50) been diagnosed with stage 4 DIE and need a hysterectomy (due to flooding out periods and adenomyosis) and endometrioma out and a bowel operation.
Having a child isn't the solve the endo problem and shouldn't be used a such as its a child involved.
I didn't get pregnant to help the endo. She came along out of her own choice, lol!
Diagnosed at 49 I didnt want any hormonal treatment as its not my thing and I feel I just need it all out as I'm all stuck together.
If I had my time again I would have got help sooner and definitely tried hormonal treatment to slow the growth of endo.
I just put up with it and it's now taken over my life now until surgery.
Sorry to go on but I would get some hormonal help and only have a child if you want children. They don't fix endo.
I agree with everything everyone has said. These are two very extreme options and you should absolutely only have a child because you want a child and the time is right for you, not because you want to reduce your pain. It is a huge life long commitment that is incredibly stressful and tiring even if you really want it and we know stress and fatigue can impact endo too.
Have you tried:
Hormonal Medication e.g deinogest helps me.
Nutritionist - there are lots of changes you can make to diet and supplements that manage pain as endo is an inflammatory condition. You would see a nutritionist who specialises in this for advice.
Physio - you can use stretches and abdominal massage to alleviate pain, some of endo pain can be caused by an overactive pelvic floor response to the pain that can be relaxed for example.
I would definitely be seriously exploring the above before either of the options the doctor has put to you. These aren’t ‘quick fixes’ but in reality I don’t think there is one.
Hello, I'm glad you have got your diagnosis much sooner than most. Firstly, please don't feel pressured into anything immediately. A hysterectomy or a pregnancy is hugely life-changing. I have done both so I feel like I can speak about it. I went through IVF and I'm so lucky that it worked for me and I now have the most beautiful little girl. I was told pregnancy gives you relief from the pain. For me, it definitely didn't. It was the hardest time of my life. I had adenomyosis too so I think thats why the pain didn't ease up, as the womb expanded the pain just worsened. I don't regret going through it, it was worth it all. I decided I couldn't ever do this again so I opted for the hysterectomy which is a cure for adenomyosis but not endometriosis. I am 38 so alot older than you and I've had my baby so I know it was the right time for me. I've given so much of my thirties to endometriosis. 4 surgeries and I'm just exhausted. I'm only 7 weeks post op and I still have alot of pain but I'm hopeful that it will eventually ease up. I'm also on hrt which is another tricky thing to get right but my ovaries had to be removed so I am menopausal now. I hope this is of some help. Best of luck to you. Ps don't say you have a low pain threshold. You have probably told yourself this. You are going through something not everyone can relate to so you are stronger than you think x
What is with some of these consultants!?! They really annoy me. Had he even suggested other non invasive options? Like trying a very strict diet of no dairy, no processed foods, no sugar, lots of fruit/veg etc for a couple months? And also because you're so young, who knows what the advancements might be in another 10 years. Maybe there'll be a cure by then. I wouldn't have one that early if I was you. My friends only started making families in their mid thirties and focused on their careers in their 20's and of course having fun!! 100000% get a second opinion xxx
I'm sorry to hear you are in so much pain. What rubbish options hey! I have also been given this option multiple times by multiple doctors for years. They are so flippant and uncaring. I am 34 now just had my second laparoscopy surgery 2 weeks ago (one before was 2 years ago) I have severe endo and Aden and a bunch of other stuff with it.
I refuse to have a hysterectomy because it doesn't always stop the symptoms. It's a disease that you will still have regardless. It may reduce the pain/symptoms but it also may not. Having a baby as you know is a huge responsibility and my worry was always yes, the endo pain my reduce/go whilst your pregnant. But it comes straight back after you give birth, usually. And then not only are you doubled over in pain but you also have a baby to to take care of.
My suggestion, try to hold on to your insides for as long as possible, don't let them dictate your options. There are other avenues that may help; acupuncture, Chinese herbal medicines, diet and lifestyle, exercise, mind set, hypnotherapy, pain clinic, support groups, an absolute array of different medications to help with bleeding and pains. Lap surgery's to remove endo. Etc etc.
Good luck and don't be bullied into thinking hysteroscopy or babies are your only options.
These are not just extreme options they are outdated. Pregnancy is not a cure and neither is a hysterectomy (unless you have adenomyosis). Sadly there actually is no cure, but there are a range of treatments that can help.
I think you should consider asking to be referred to a different gynaecologist, with an interest in endometriosis. Have a look at the NICE guidelines on endo (you can Google them), there is a recommended pathway for treatment. That should give you an idea of some of the treatments available.
There are specialist centres ( BSGEs) but you have to meet specific criteria to get referred.
Your GP can prescribe Naproxen to help with bleeding, also have you been on the constraceptive pill/ progesterone/ coil to regulate periods? These of course don’t suit everyone in terms of side effects or effectiveness.
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