So I had surgery in July my pain ramped up post surgery and I'm not in excruciating pain daily some days bed bound I work and had 37 days of since km worried about my job they seem OK but its a worry still. I've exhausted alot of options eg. Pain relief and dienogest, doubling my pill for hormones ect. Nothings worked so far sp next step is medically induced menopause I'm only 24 and scared thankfully it will be temporary to see if it helps. What should I expect?
Also if this doesn't work do you think next step would be to advise me hysterectomy because at what stage do they advise it? I got so much thoughts in my head I'm so young I would ideally like children but not currently ready. But also worried if gets to bad they will advise me to have it out my partner supports whatever I decides but hoping this will be a long way off and very last resort?
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Have you had an MRI to see what’s going on? What painkillers have you tried?
Zoladex does work for some, I thought it was worth a try. Have you had any ops yet? A hysterectomy at your age isn’t something they’d go and do straightaway
No mri I have a internal scan on Friday to check for adenomyosis... yeah had one op ablation had argument with them saying I wish I knew I had options. I've had alot of painkillers but Currently taking dihydrocodeine everyday. Have to be careful cos some can interact with my other meds ect.
I dunno they said they are running out of options and it's up to me ultimately but can I cope with this amount of pain my whole life.
And people around me are telling me to prepare incase this menopause doesn't have effect... I'm so conflicted and confused
Let us know how the scan goes, see what it shows. They should do an MRI as well though, pelvis and abdomen.
pain nurse told me Tramadol was better than codeine, I have tried it. For main pain I take either Oramorph or us Diclofenac, I’ve tried morphine caps and patches, plus other things. Nefopam is non opiate. So many to try 🤦♀️
It is confusing because most of it is experimenting as there isn’t a fix yet.
Is the Gynae you’re under an Endo and fertility expert? If not get referral to one, because of your age you should be getting all options especially if you do want children. Having children has been know to help but not always looking my term. It does get confusing and frustrating.
I have no idea I want to ask but my mum thinks it's not right to as sounds like we are undermine them. I dunno I'm so confused with it all one gyne tells you one and another tells you another so what are we ment to believe. I might request a mri to but not sure if she will let me if she thinks ultrasound is clear. I gave her some facts about the surgery they done on me and she got all defensive so I feel abit rude saying anything else and I'm scared
Don’t be scared, they rely on us being like that. You have every right to question how good they are and what’s happening and getting a scan, it’s your body and life, they are there to help not hinder. If they brush you off it’s called gaslighting, it means they can’t or don’t want to answer you. Ultrasound is notoriously bad for showing Endo unless the person knows what they are looking for and unfortunately there aren’t that many. MRI is better but not perfect.
Ablation has been shown to cause more pain and scar tissue and more damage essentially, what is needed is for the endometriosis to be excised by an expert, not a general gynaecologist. Best thing is to join Nancys Nook on Facebook, there is tons of information to inform you of the best options. Having a child will not help endometriosis, nor will hormones. They can at times mask the pain but it will not stop the growth. A hysterectomy will not cure it either because it grows outwith the womb. You need to do more research to make an informed decision and I highly recommend Nancys Nook as the best place to start
Yeah I'm on that group. Yep I told my gyne that fact and she got all defensive about it straight away. The nacys nook it says about specialist but are the in nhs or private?
I’m in Scotland so not sure if things are different here, but here you can only see a specialist if you’re already diagnosed as stage 4. So there are some on the nhs (England especially) but not sure the ins and outs sorry
I had a ultrasound which diagnosed large fibroid in my womb causing constant heavy bleeding and pain so I had ablation surgery at 38. Worked for about 6 months, different pain followed, but with less bleeding, painful bowel movements so sent for another ultrasound. This time they picked up fluid in womb, ovarian cysts and signs of endo, so was sent for an MRI. This diagnosed stage 4 deep infiltrating endo in ovaries, tubes, bowel and pouch of Douglas. I was put on prostrop to induce menopause which after 1st month has been amazing no bleeding or pain. I was referred to a specialist centre and am on the waiting list for a full hysterectomy and bowel surgery next year, I'm now 45. I'm telling you this as the diagnosis is a journey and they will do everything possible to avoid damaging your child bearing potential and try lots of different options that hopefully will work for you. Push for MRI it can provide good diagnosis without surgery, and a chemical menopause may allow things to settle down whilst not affecting your ability to have kids in the future. Do your research, keep pushing, ask lots of questions and don't be fobbed off. Good luck and best wishes
I'm 40 and have just been diagnosed with endo. I was advised to get a hysterectomy with the removal of my ovaries but I don't want to close the door completely on the change of having children. Am I just kidding myself? Are the chances so tiny?
You should be under an Endometriosis specialist not general gynae -often the latter attempt to help but don’t have the qualifications required and your treatment sounds inappropriate. “Have a go surgeons “ can both miss stuff and mistreat and make things worse .
While I respect your Mum wanting to be polite it’s not acceptable for you to have inadequate care. You aren’t here to suffer pain because you just want to be respectful and you are entitled to a second opinion. So go and get it. Pleasing the surgeon or for that matter your Mum isn’t the priority here. You don’t need to be rude or unkind but assert your need for yourself. Good self advocacy is an essential part of the kit of dealing with endometriosis.
Get it from the best specialist you can. There are far too many women who deal with long term issues not only because of the lack of knowledge around this disease but from those who frankly do a poor job in treating it even outside the NICE recommendations. Do ensure you learn about the disease and where is the best place to get help.
This will take time so in between read up on Katie Edmonds Heal Endo to see how you can support yourself.
hi. So sorry for all you have been and are going through. My 18 year old daughter has had very similar. She started zoladex implants 3 months ago, having her 3 rd on Friday. To be honest it really hasn’t been as bad as we feared. She has had a couple of flare ups but overall is ok- certainly helped with bleeding. We have had 4 years of horrible symptoms hospital trips and laparoscopy. We have learned to trust the advice and try and keep positive , take each day at a time.really hope it helps x
Definitely get MRI. An ultrasound missed the large complex cyst I have. They said there was nothing only a fibroid but I went back to my doctor and said something wrong here and he listened and referred me for MRI which showed the cyst. It is your choice your body on what diagnostics you have. Ultrasounds do not show everything. Do not be fobbed off and query people what they tell you. I am at that stage at the moment and some consultants do not like to be queried but you don't care about you want the most information to make informed decisions. One consultant told me I was going down rabbit holes. I said what might be a rabbit hole to you isn't to me. Hugs to you stand firm you have my support for what it is worth. And the people on here are so helpful xxx. Some of the ladies on here a rock of sense and I have taken their advice to push too I don't care who gets defensive and rolls their eyebrows at me. I have now gone to endometriosis specialist because to be honest the others hadn't a clue.
I’m in Ireland so went privately. I went to other people when I wasn’t getting info. Gynae oncology nurse also got a bit funny with me around questions. They have to be open to questions. Worrying about offending is no good when you need answers.
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