I’m so sorry for this rant but I feel so down and sick of having an unsupportive family when it comes to pain or just life in general.
I’m on the depo injection but I’m still in pain despite not having any periods for like 6 months. My pains got worse yesterday after a long 4 days of playing golf and walking 6 miles approx a day. My hips and lower stomach were in so much pain and still are. I can’t tell my parents as they call me a liar or a drama queen so I just keep things to myself and try to get through the pain.
After some arguments today, they were just insulting me over random things like relationships and that I’m gonna be forever alone as no guy will put up with me or endometriosis pains. This really hurt me but I just broke down in my room secretly.
I just don’t get why they can’t understand endometriosis when they could just read about it online but they aren’t bothered or know how to put themselves in other peoples shoes.
I’m worried that endo maybe still be there or coming back but with no periods, it’s probably unlikely but the depo injection isn’t helping the dull, achy sharps pains I get in my pelvis towards my ovary area. Sex has become painful again as well.
Sorry for the rant and I know some of it doesn’t relate to endo but I don’t know who else to talk to about all this.
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princessk09
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Oh Princessk09, Im so sorry to hear this, it sounds like you're having a tough time. I wonder if your mum accompanied you to a gyno appointment she might learn more about endo. Make sure you dont keep it all to yourself talk to someone and always feel free to rant to us. Hope things get better soon
My mum would never go to gynae appointments with me, I always have to go on my own. She doesn’t really want to learn about it tbh but I just wish she would. xx
Get it all of your chest, there is truly nothing worse than feeling so alone. It’s so unfortunate your parents don’t understand the extent of your pain, it is literally a horrific condition. I can totally relate to this, feeling like a liar etc as doctors and consultants didn’t really believe my symptoms were so bad as I am literally in pain 24/7. I’m so sorry it’s come back for you, remember how strong you are - you have kept all of this to yourself and I have no doubt that you paint a beautiful smile on your face to hide that pain. You’re amazing for putting up with this condition, I wouldn’t wish it on my worst enemy. Your parents will eventually understand and you will find someone who loves you and cares for you no matter what. Chin up lovely, remember what you go through on a daily because of this horrendous disease, you’ve got this xx
Just saying, you’re never gonna be stuck on your own, don’t let them get to you, one day you’re gonna find a bloke who gets it, hopefully he’s more supportive than your parents x
I don’t know if you’ve had surgery or not so this might not apply to you. But my ongoing pain in hips and pelvis like you describe (despite excision and being on hormones afterwards) was down to surgery scar tissue. This can be massively helped by physio, exercise and massaging old surgery areas. And I’ve found that men are generally so appalled by what women have to go through with periods and endo etc that they generally are very understanding and sympathetic. Good luck xx
Hey, I had surgery last July but didn’t start any treatment till 6 months after so I was always still in pain. I can’t afford to go physio at the minute but I know men aren’t understanding at all xx
I'm very sorry and I really understand what you're going through. Don't you have any brothers ir sisters you could talk to? I've had similar issues, family members saying that it's all in your head and you should go to a psychiatrist. It' s hard to hear that from the people you love. You'll get better, it's not always going to be like this.. Don't believe what they tell you, you will find someone. Be strong and share your feelings with someone
I’m an only child unfortunately and my family aren’t exactly close like no one talks to each other. I have a guy I’ve known for years and has been there still day one of going to doctors, surgery etc and he’s really the only person but I end up feeling guilty for dragging him into my problems xx
Don't feel guilty, if he's been there is for a reason, you probably are a nice girl with a lot of things to offer, apart from your pain. Don't let it take control of your life. We all need support, so don't feel bad about It.
Thank you, I’m just a bit stuck at the minute as my pains are coming back slowly even though I am on the injection. I’d go to the doctor but they can’t do much apart from maybe refer me to another gynae who is better xx
Ask the GP to refer you to a specialist endo gynae Centre. I don't know where you live but you can find them listed on British gynae endo approved centres site. If you can afford it you might be able to have an initial consultation for £150 - £200.
Yeah there’s an endo specialist at the hospital on my uni campus which I think is on the nhs. Unfortunately I can’t afford private consultations atm xx
So sorry to hear you are struggling. It's so hard when you feel unsupported but like the others says there are lots of us on here who understand how you feel so go ahead and rant! I think family members can sometimes feel ppwerless/helpless and dont know how to support so they minimise the problems in the hope they can jolly you along and they don't have to think about it. I have a very loving family who have been supportive but really only learnt about the extent of the condition after my 3rd lap recently. I sent them lots of info and I feel better understood now. My husband on the other hand buries his head in the sand and makes no allowances.
You are strong so keep battling and if you think it's flaring up get a referral to the specialist centre xx
Thank you, I’m in so much pain tonight that just starting randomly in my lower stomach but I can’t live without flinching.
It’s hard for people and doctors to take me seriously now as I’ve not had periods in 7 months from hormone treatments. It’s like going back to before I had surgery and people not believing me xx
So sorry you're in such agony. The pain is real so keep persevering with the doctors. They should listen in the specialist centres. I had the coil and only very light monthly bleeds but had pain most days and my endo had definitely grown back!
I’m on depo injection atm which apparently helps stop endo. It’s stopped most of my pain which was my periods but I’m getting pain flares up again throughout the month. But I don’t know if endo can grow back on the injection xx
Hi There! I hate to hear that you are.in so much pain but none hears you. Have you ever considered essential oils? If you have. But aside your thought! Lol. I have been using dõTERRA essentials oils for me.and my family for 4 years now. One of my friends had endometritus. These are not your typical oils. They are 100% pure. PM me if you would like more info!
There’s nothing worse than being made to feel like a liar when in fact it’s just that people who don’t have this Disease don’t understand it it’s even harder when it’s family 😔 I hope things get better for you if not we are all here this is the best place to rant and vent 😁 xx
So sorry to hear that! Family may not understand the extent of how endo can affect someone. If i were you read some newspapers or magazines with an endo story in and be lile "oh look this persom got what i got andwhat they had to say is interesting take a read in yoyr spare time" it is sneaky but might plant 'a seed 'in thier head how bad it is. For examples walesonline has fancinating new artlce about a women who has endo on lungs and it has also affected her eye. I send you link privately if you want it.
Plus you will nevwr be alone most people on here that i have read have got partners. Even some days men post on here in regards to thier gfs pains ect. I been with my bf for 5 years and he is supportive! Theres no rush to find anyone but when you do make sure they are a gem! Even if it takes time. Everything will fall into place but try to focus on yourself and out yourself first for awhile. Endometriosis UK has amazing helpline. Plus we are all family on here! Xxxx
Thank you, yeah my parents only really about golf over my health. I’ve been in a lot of pain the few days and they still made me go practice despite being in agony.
I’m kind of in a long distance thing atm which is hard because I rarely see him but he’s really supportive and loving plus he understands endo a little bit xx
I'm reading through a lot of the comments, I'm very new to Endo but I read a really interesting study about hormonal treatments.
The gist of Endo as Im sure most people know is that tissues from inside the uterus somehow grow outside. then they act as the uterus does, building up lining and then shedding, but they have nowhere to go which causes a lot of inflammation which is the main root of the pain. Other pains are caused by the physical pulling because some organs can be stuck together.
So, one theory is that Endo is caused by a hormone called Gonadatrophin releasing hormone being released too quickly - which effects other hormones in the body. The treatment suggested is to use a bio-identical progesterone pill when your own body should be releasing progesterone, to balance it out (not a synthetic contraceptive progestrogen like mirena, mini pill or depot). This stabilises the lining of the uterus as well as having other benefits to the body such as lowering risks of breast and ovarian cancer (which are both increased by excessive estrogen). I believe "cyclic-progesterone therapy" is hard to be prescribed with especially in the UK.
However to circle back to my point, I think that surgery followed by a proper hormonal treatment to treat the heavy periods, you should be able to slow down the rate the Gonatrophin releasing hormone and therefore slow down the progression of endo.
I am not a scientist but I am very interested and do like to do my own reading on the topic and will be asking my OB/GYN about this if I can be put on it after my laparoscopy.
I also have PCOS which I managed to get under control with diet and lifestyle and avoid Xenoestrogens and endocrine disruptors. This is a life changer for me with unbelievable results. Its actually the only reason I realised I had Endo, when I finally got my periods regular. I think my pain would definitely be worse if not for the good habits I formed for my PCOS, so I hope that after surgery, with a good hormone therapy in place and my lifestyle I should be able to have a normal amount of manageable pain which I would be happy with.
PS. sorry this is so long.. Im not a DR or a professional, just experience and reading a lot of studies.
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keep strong xxxx
Rant!
2 weeks post Laparoscopy, still in so much pain! 
alone and hopeless
Confused after gynae appointment - need advice
