please help me - you’re the only community that who actually helps and understands!
I have had 3 miscarriages(natural) - all early. Since my first miscarriage 14 months ago I have been in constant pain. 2/10 half the month and maybe 6-7 for maybe 1 week. I have heavy periods and recently clotting, especially for the first 2 days
it might be worth saying I’ve had every single other miscarriage test going A few results which can be managed in the next pregnancy but nothing crazy
No one can tell me why I’m in pain and why it all started when I was first originally pregnant. All scans show bits but the next scan shows something different - maybe a fibroid, maybe a polyp. Etc. a saline scan showed potential adenomyosis. But nothing concrete at all.
my pain during periods is not great but it isn’t horrific like I’ve read on here. Ideally I stay at home where the bathroom is nearby for the first 2 days and it’s unpleasant but I’m not in agony or rushing to a&e. I rest, cancel plans if possible, mild painkillers and constant hot water bottles. It seems to be getting slightly worse each month.
I’ve been extremely lucky to be privately referred and been offered a laparoscopy and hysteocropy but I’m worried I’m not bad enough to quantify surgery / people on here seem to be in agony and I’m just in constant medium pain.
surgery obviously has its risks so I honestly don’t know what to do. No specialist can guide me or tell me what’s causing pain or miscarriage and I’m a bit lost - can you give me your pov?
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Maybeendo
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Just remember that all those in agony first started somewhere in what was probably a lot less pain. For most, endo will be progressive so it is always best to know what you are dealing with earlier rather than later when the disease has become deep requiring must riskier surgery. Early diagnosis is key.
But it must be done by someone with expertise in diagnosing and treating endo so as you have access to private insurance be sure to choose your specialist well. And if they should find severe disease they can’t treat that. You would need a detailed endo specific MRI and referral on to a specialist endo centre.
Thank you. I saw an Endo specialist today but he recommended skipping the MRI as he said it may or may not show up and suggested moving ahead with either the surgery or not doing anything - it was up to me. He did a physical exam with his hand im still sore from it. He was nice and has good reviews for Endo - I’m just lost as no one can really advise either way - they basically said it was up to me to decide whether I can live with the the pain or not. But also said the pain could also not be Endo - no one knows. No one can explain to me why this all started when we had our first pregnancy
I had an mri after my lap surgery as Dr's were worried it was in my bowel and other parts of body. I would have lap they wouldn't offer it to you if you didn't qualify and like above have mentioned you don't want it getting any worse.
The endo specialist I saw said that using hot water bottles during your period is a good surrogate marker for having endo. Constant pain is not normal even if you don't feel is excruciating. I'd say go for the surgery (with an endo specialist). It's a low risk operation and with removal there a chance you could be pain free 🤞 xxx
I would say do the surgery if it was me. Being in pain during your period and having to stay at home and potentially cancel plans is not normal, you should not have to do that.
Like others have said everyone starts somewhere and it is best to catch it early if it is endo. If it isn’t endo at least you have ruled it out and can regroup.
MRIs don’t always show endo, it is up to you if you want one but the surgery is the only sure fire way to know whether it is or isn’t endo
I’m so sorry this is happening to you. You pain and discomfort and sadness are real and awful to you. It’s valid and it’s real and I’m so very sorry. The privilege of private healthcare is wonderful and you need to grab it with both hands. The truth is that something is wrong as you have pain and that certainly qualifies you for intervention that you deserve. you’ve been through such a lot with the miscarriages and you need answers, this is valid too.
You can have a lot of pain with Gyne stuff or very little. So until you have the lap and hysteroscopy you don’t know what’s going on and that’s qualifies you to have these treatments guilt free. So please don’t be apologetic for the privilege if private healthcare ok 🫂💞
Thank you for being sensitive about it on here, that’s very generous hearted of you and you sound like a beautiful soul. I wish you all the success in the world ❤️
I personally would go for the laparoscopy as if there’s anything that is effecting your fertility it can be found and dealt with.
Unfortunately it was left way too late with me and nothing could be done to restore it and I just wish I’d had my first laparoscopy done 10 years sooner and the outcome may well have been different.
Thank you 🙏🏻 I’m so sorry to hear what you’ve gone through. My biggest learning from all of this is how much suffering women go through to be listened to and how much we have to continually advocate for ourselves. Xx
you should have a MRI as well, did you have it? If suspicious for endometriosis I would do surgery - I had it late and I had stage IV endometriosis and because I refuse HRT, now osteoporosis at 47.
I’m so sorry to hear what you’ve gone through that sounds so tough
Interestingly he said an mri is too inaccurate and wouldn’t recommend as doesn’t always show up, especially if mild -but I have now pushed back for peace of mind. If something shows up that’s my answer. If nothing shows on that and an hysteoscropy and a few months go by, I will then opt for surgery but at least know I’ve tried to rule out other bits first.
Maybeendo thank you for sharing, I’m so sorry to hear about your miscarriages and I’m sorry to hear you are having to make the difficult decision about whether to have surgery or not.
It isn’t any easy decision as like you say surgery carries risks, there’s no guarantee it will improve the situation long term even if it is endo and the specialists will often just say it’s down to you to decide if your quality of life is so poor with your pain that you’re willing to take those risks. I also don’t have the debilitating pain described (have likely stage 4 as my ovary is stuck to my uterus shown by mri so you can deffo have it with less pain, I also don’t have heavy periods and had endo confirmed by lap 4 years ago) which does make the decision more tricky however I was told by my endo specialist that there were 2 reasons to have it, 1 the pain as referred to and 2 if I was struggling to have a baby. There is some evidence it can improve the likelihood of this so it may be worth considering for this purpose in your circumstances.
The other thing to say is that your pain does sound significant, I think we’ve been socialised to accept unreasonable amounts of pain associated with our periods as women which makes it hard to judge when something is wrong. The fact that it’s been worse since you miscarried would also make me more concerned I think.
Thank you for you reply. I’m sorry for what you’ve gone through but glad you finally have answers. Interesting peoples pain are so different.
I walked into my consultation praying to be signed off for surgery but I came out with more questions.
He’s an endo specialist and said although I have symptoms - my main issue - the pain that only started during pregnancy and hasn’t left) is unlikely to have been triggered by the endo - and that it’s unlikely to have caused the mcs.
He said it could be endo, but also hormonal or other issues etc. and the surgery is there to rule out / fix problems
if I’m honest, I was quite upset by the physical examination - I didn’t realise I would have one. I’ve had loads previously but he didn’t explain what he was going to do and he shoved his hand so hard and deep, I’m still in pain now. I get that’s normal but as it wasn’t explained and hurt so much it made me a bit upset after. I’ve never had a physical exam that was so brutal
I’ve messaged his secretary and asked whether we can do it in stages. So a hystercropy and mri first. Then if nothing shows and pain continues, then surgery. Although longer, it would make me more at ease and have no regrets if there’s side effects. But I’m not sure if he or the insurance will agree so I’m waiting to hear.
Unfortunately I had a very similar experience re physical examination with an nhs endo specialist who would be the one doing my surgery if I have it again and I was also upset about it. It’s a real shame there aren’t more women in the field. It has really impacted my trust in him which contributes to my reluctance to have the surgery again so definitely something they should manage more sensitively.
The difficulty with women’s reproductive health stuff is there’s just always so much that is unknown isn’t there. Even now I have a diagnosis from previous lap but still MRI says no definate signs on endo despite stuck ovary and cysts, and still the specialists can’t give me clear advice on whether to have surgery again or not, whether it will get worse or not, whether surgery will definitely help etc because the research just isn’t there.
There is nothing wrong with wanting to equip yourself with as much information as possible before making a decision and they should understand that. I’ve had an MRI and am still considering sourcing another from an endo specialist as mine was done my a general radiologist. Fingers crossed they agree to go ahead with the staged approach for you.
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