So all of my teen life I have suffered with heavy, painful periods. I was always told this was normal and has no reason to think otherwise. As a teen I didn't live with my mum so I would go to the doctors and complain and was fobbed off each time so I just plodded along.
I fell pregnant at the age of 16 and I have 4 children. I had my last at the age of 25.
Since then, my periods became worse and worse. Contraception wasn't helping, making me bleed continually and I wasn't able to use some forms due to my weight.
I then found out the pain I am in isn't normal at all and I decided to see a doctor.
I let her know all of my symptoms. The main ones being: heavy bleeding with clots, pelvic pain, hip pain, lower back pain, pain when going to the bathroom, pain in my thighs shoulder pain, fatigue, a barking cough and I had also had three miscarriages within a year. These generally happen during my period or ovulating and the pain is often milder during the rest of the month.
She agreed that it definitely sounded like it could possibly be endometriosis and referred me to hospital for a laparoscopy. I had my consultation yesterday to see if the doctor there would think I needed it.
To say I feel let down would be an understatement. She started off saying she wanted to ask me questions which I said was fine. She asked if my periods were heavy, with clots, if sex was painful, how many children I had, if I gave birth vaginally to them all and so on. Not a single time did she ask what other symptoms I had. She kept interrupting me and talking over me.
She then asked if I was using contraception. I told her no as my husband recently had a vasectomy and the contraception I have tried made me bleed and the others I am too over weight for. The only one I haven't tried is the mirena coil and I am not keen on trying it either.
Well as soon as she heard this her mind was made up. She asked to examine me, hardly had a feel around and pushed my belly, where there's fat, no where near where the pain usually is. She asked me if I get constipated and I said yes but I also suffer with diarrhoea sometimes too.
After all was said and done she told me that 1, there is no way it could be endometriosis because I'm not in nearly enough pain as someone who does have it. 2, she believes I'm suffering from IBS and referred me to another doctor for that. 3, because of my weight she is not willing to perform a laparoscopy. 4, I have to go on the mirena coil and only once I have lost weight she will then perform an ablation called novasure and then she may also perform a laparoscopy.
I just nodded silently and walked away. I sobbed afterwards. I feel like I've been brushed off. I have suffered with this since I was 13/14, I am now 31. I am diabetic, I have cysts in my ovaries and I am currently on medication to help me lose weight but it honestly doesn't seem to be working much and I'm not sure if its because of the issues I have. I have no idea how much weight she wants me to lose before I'm eligible for the other treatments.
I've decided to go back to my GP because I'm not sure if the advice I was given was correct or if I'm overreacting, has anyone else been in this position?
Sorry for the long rant, this is the first time I've ever been on a forum to talk about this. If you made it this far, thank you for reading.
Pumpkin x
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Pumpkin31
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Thank you, I thought I was being selfish for feeling like this and maybe I was wrong and they were right, but it doesn't feel right, if that makes sense? After I calmed myself down and spoke to my husband I decided I would keep pushing for the next year for a second opinion and if I'm still in the same position next year (when I'm going to uni) I'm going to use my uni loans to go private for the surgery. Will cost atleast £3000 but even if they look inside and they find nothing it'll give me peace of mind. I will also continue through with the doctor regarding IBS too and see if they can help with any other issues I may have x
Ask for a second opinion and try to go to that consultation with a chaperone, your husband.
It is well documented that if you are a person with a high BMI, particularly one 30+, then healthcare professionals blame everything on your weight not realising one of the consequences of some conditions is an increased BMI.
The obvious solution is to lose weight but unfortunately but this doesn't get rid of the other prejudices some healthcare professionals will still have against you.
Thank you, I will do. Its complicated because we aren't very confrontational people I think I will just have to suck it up next time I see someone and ask to be heard before they examine me. I was thrown off guard because there was an assistant nurse in there too who just sat and stared at me, made me feel so uncomfortable. Why am I like this? Haha.
Yeah unfortunately my BMI is over 30. I do understand that being overweight will absolutely not be helping, I don't think she grasped though that I've not always been overweight. If these issues only occured with the weight gain, I would probably agree that was all it was, but they haven't. She just didn't really seem to get that.
I do believe these issues are making it a struggle for me to lose weight, this medication I'm on suppresses the appetite so I'm not eating as much and I've hardly even touched chocolate and lost about 2lbs in a few weeks. My mother in law was telling me about her friend who is also on it and lost 9lbs in a month. I then gained 3lbs back as I took poorly, still didn't eat any more though, so not too sure whats happening. Seems to be the cycle thats happening.
She was meant to discuss my health issues and ask what medication I'm on and she didn't bother. As soon as I said I wasn't really open to going on the mirena coil she just flipped a switch. It was like thats what she could focus on to say I've not tried everything and I need to do so. Her actual words were "I know you don't need to use protection woth your husband having a vasectomy but this will ease the heavy periods" it was only later I realised I should of clapped back with "Okay, and what about all of the pain I experience?"
I'll definitely be going for a second opinion. And and third and fourth if I need to.
Hey there, sorry to hear you feel let down. Sometimes the doctors just focus on your fertility and think you’re ok just because you’ve had children, completely ignoring any painful symptoms and mental health issues caused by this disease. Don’t be intimidated into doing anything you don’t want - if the coil isn’t for you, then that’s that (personally, I didn’t want any more things shoved up there). There are other options and I suggest reading about them on the Endo UK website
If you haven’t already, keep a diary of everything- your symptoms, when they happen, where, how painful and your mood. Doctors tend to respond well to data and patterns.
As for your weight, I’m also type 2 diabetic. Just after being diagnosed, they also wanted to remove an endometrioma but couldn’t go ahead because my hba1c was so high. I was told to eat lower carb, and within 6 months had shed 10kg without even realising. So it’s not just chocolate, it’s about cutting down on biscuits, cakes, bread, potatoes, pasta and rice (you can have smaller portions of those), and upping your protein and vegetables. I still had big portions of food, just not full of carbs. It might also help with inflammation and other issues associated with endometriosis.
Thabk you for your reply. You hit the nail roght on the head, I definitely don't want anything elelse shoved up there! Had 4 kids, we need smears, examinations at these appointments, UTIs and so on, don't need one more thing that could cause yet another issue!
I will definitely look into a low carb diet, being on this new medication curbs any cravings I have and I have definitely lowered my portions, talking going from a large oval plate to a small plate and only managing half. So was still surprised to see I wasn't losing, however, someone else mentioned I may have been eating too little and not eating enough veggies too. I have also stopped binge eating after cutting ties with my mother, but thats a whole other story.
I am also going back to college, uni next tear full time and my hubby is starting uni this month so im going to look into prepping meals in advance. If theyre already made up healthy, I can't complain about prepping everything. I also have a bunch of workout equipment at home so going to start working out too. Cutting ties with my mum has changed me in so many ways and I feel a lot more positive so may actually be able to manage this!
I have made a list of all of my symptoms but never thought about keeping a sort of diary with dates of when these issues occur. I will also be trying this too.
High BMI is a nightmare to get regarded as also having any form of illness. It’s an equivalent of being female all over again.
Endo and PCOS both carry a lot of potential Co morbidities and unfortunately some medics instead of viewing if you have one don’t necessarily flag it increases the likelihood of the others. So it is with IBS. If you have endo you are more likely to have IBS and that carries a high likelihood of lactose intolerance. If your gut is inflammed your more likely to have digestive issues and gastritis etc etc ….. If you have endo you are more likely to have hypothyroidism, T3 resistance , higher experiences of endo pain tend to be associated with the endo if you also have thyroid problems and if you have that a higher risk of diabetes …all carry a higher risk of heart issues later, likewise PCOS and diabetes and endo are a star bunch too. All carry increased risk of mental health issues of anxiety and depression. There is a stronger association of those with endo also being vulnerable to bi-polar disorder. So it very easy for any medic to push it into any of these territories without giving the endo itself priority. Even if your bmi is pretty on the nail btw .
Weight gain can come from early menopause or POI , Eating foods that your body can struggle to tolerate can make the weight increase as well.( Sometimes identifying what your system gets triggered by can of itself enable the body to shed weight ). Imbalanced hormones can lead to massive weight gain itself as the body struggles and the body can be more stubborn to shed when responding to diets etc. vicious cycle . Medics sadly don’t mentally allow for that and can play the weight card to too easily dismiss any patient and that’s wrong.
So play the card of thank you very much for being concerned I may also have IBS but I need a second opinion . Maybe for your self a 48 hr trial of coming off lactose given the gastric issues may remove a trigger which in turn reduces the fuelling of the endo itself and well as soothing the gut. Many sufferers then find a good probiotic helps clear out more frequent flyer bugs like klebiesella that endo sufferers have that cause uti’s, diarrhoea/constipation and can be a trigger to the body to no longer tolerate lactose ( but circular huh 🤔)
Mirena coil is a pretty standard treatment for many medics for endo and as it’s more bio identical than other pill based progestins some can tolerate much better. You’ll probably encounter a similar conversation again over that. Perhaps ask for a direct conversation about the coil to ask why they are keen to promote it and at same time put your concerns on the table.
If you can’t take someone ( preferably male -I know but sadly it does make a frigging difference ) in with you always say something like “I tend to blank what’s said in these consultations so for my reference am sure you’ll be okay of I just record it on my phone while we chat”. ( I do it because a ) am a woman b) am older ) It’s not okay just to record without informing. It can make a difference enough to get appropriate polite service. In my book anything to get the service I should have been getting anyway.
Thank you for replying. I didn't realise so many health conditions can happen alongside endo. I do have polycystic ovaries, but not PCOS apparently, they said my levels of (prosteogen?) are totally fine, I just have lots of small cysts inside my ovary and that my ovary is double the size, I do believe. I do also suffer with what I believe is IBS, as in I can have a flare up from any foods depending on the day. I do also suffer from diarrhoea from eating thinks like too much cheese so will definitely look into trailing a couple of days lacto free to see if it makes any difference.
I will definitely ask them that about the coil. What got me so much was all she was focused on was stopping the heavy bleeding, while I do agree it may help, in my eyes its a temporary solution for one issue and she just wasn't interested in the fact that I suffer with pain all over my body. So its definitely worth asking.
I think I will also make sure to ask and record all interactions from now on. Even if I believe everything is going swimmingly, just for the fact I had so much thrown my way that I forgot parts of what she said. It will also help just incase things don't go great and I will have proof of whats happened.
I think at the last count they reckon there are 275 or so Co morbidities recognised. Which is why when medics deny connections it leaves me aghast and feeling rather unheard. Glad it’s a help x
you may find the aching all over improves with coming off the lactose ( look at the details on this because it’s not all dairy is removed but how it’s processed or not - so yoghurt and kefirs out , hard cheese in … you can get lactase enzyme tablets which work well for many people so you can go out and not be antisocial too !) Fibromyalgia, Chronic Fatigue are oft partners in crime with endo but endo removal, dietary change and specialist physio based on hypopressives can change that significantly.
Wow! Sounds like I need to a lot of research!! What a shame its so hard to get help for such a complex illness. Thank you for your advice, I will be looking in to it and giving it a go!
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