Discovering I have endometriosis years after ivf

[Peppermint3]

I found out yesterday that I have endometriosis after a MRI scan on my colon picked up tissue attached to my right ovaries. I’m really shocked because I’ve had a miscarriage & two failed rounds of IVF and it’s never been picked up that I have endometriosis. I didn’t go through with my last ivf which I’d paid for because I couldn’t cope with another failure. I’m now too old to use it. My question is surely it would have been picked up during my ivf that I had endometriosis as your ovaries are scanned during treatment

[AnnieAnnie]

Hi there, I don't know the answer to this however I would be interested to know what others experiences/views are. I have suspected for years that I have endomestriosis but have always been fobbed off that I'm just unlucky and suffer with painful heavy periods. More recently I have pushed and pushed my GP and finally I've had a investigative transvaginal scan and the outcome is I have possible adenomyosis but need to be referred to gynae which I then want to push for a laparoscopy. My concern is I've had 3 failed cycles of ivf and nothing has been picked up during any of this, bearing in mind I've had many transvaginal scans throughout the past 6 years. I've just moved abroad so need to start the process of being referred to gynae so that I finally find out what is actually going on. Hopefully someone is able to answer your post x

[Peppermint3 in reply to AnnieAnnie]

I hope you get referred quickly. When you are trying to conceive you feel that you’ve not got much time to lose. I was oblivious that I had endometriosis but it makes sense now. I had terrible periods as a teenager but my mum told me it was normal because hers had been bad. I was put on the pill at 15 because I was missing school. The pill obviously masked my problem for years. I actually thought being on the pill for so many years so young had caused my fertility problems. I honestly thought when I came off the pill that my pains were just bad period pains & ibs. I went back on the pill after my last failed ivf because I couldn’t bear each month having my hopes dashed & having bad pain at the same time. I then had another break from the pill that’s when I thought there was something wrong with my stomach because I was literally rolling around the floor in agony. It wasn’t at the same time as my period so I didn’t put two & two together. It’s only a fluke I’ve been diagnosed as I was having problems even getting referred for my stomach. The consultant has referred me now to a gynaecologist & another mri. I can’t believe now that I never asked for further tests & just accepted the term unexplained infertility! It’s too late for me now I’m just interested to know how bad my endometriosis is although I’m not sure what the mri will pick up as I’ve gone back on the pill

[AnnieAnnie in reply to Peppermint3]

Yes you always feel like you are chasing time and that each cycle has to happen quick as your clock is ticking and fast. I have been having terrible periods since they started when I was 12. One time my mum had to call a doctor out after hours as I was in so much pain as they thought that it was a burst appendix but the doctors gave me some strong pain relief and it helped. It was my period pain. After that I was prescribed mefenamic acid which made the pain more bearable but never took it fully away, until I started the pill when I was 18. I was on the pill until I was 28 when I started ttc and since then I've not been on the pill. I have been prescribed codeine as my pain is too much since stopping the pill and there are even times then that i have to use paracetamol and ibuprofen and sometimes none of it touches my pain. Up until about 5 years ago i had accepted that this is just my body and I have to deal with it as various GPs have told me that this is it. I even asked various consultants whilst going through ivf whether I could have endomestriosis, but they've all shrugged it off. I'm glad you've finally been diagnosed as you can finally deal with sorting out the pain. I've said for years, if it wasn't for wanting children, I would have had a hysterectomy by now just to take away anything associated with having a period and the pain. But growing up I would look around at my friends and think why don't they suffer with the same pain as me. Am I just weak and can't deal with pain. So many people have said, it's just a period all woman go through them and it's made me feel rubbish for years. I've read a lot on here and a lot of the ladies say the only way to have it diagnosed correctly is by having a laparoscopy by someone who is a endometriosis specialist and they should be able to remove it or some of it during this process. If it is significant it can be picked up on a scan. It's great that yours has been picked up. I really hope that you can get to a point where your pain either goes or is significantly reduced. I'm sorry that your fertility journey didn't work, it's heartbreaking when you don't know why things haven't worked xx

[Peppermint3 in reply to AnnieAnnie]

A lot of what you have said was mirrored in my life. I was taken to the GP with suspected appendicitis & I also went to A&E as an adult for the same reason. I was given some tablets prior to going on the pill, I’ve no idea what they were called but I was meant to take them three days before my period which as a scatty teen was impossible to keep track of. I was asked once by a colleague if I had a low pain threshold & I agreed that I must do. I think my other half used to think I was a right drama queen rolling about on the floor. I work in mental health and there is such a stigma attached to unexplained symptoms. People are initially empathetic but soon get sick of hearing about the pain someone is in. For that reason alone I feel relieved that there is something physical to see for my pain & now I think I possibly have a high pain threshold!!I’ve also thought about a hysterectomy, as my reproductive organs seemed so pointless & just cause pain. I’m going to remain on the pill as it seems the best option for me & I’m going to ask for a referral to the family history clinic for breast cancer as two of my first cousins on my mums side have died of breast cancer & my mum had it. Obviously being on the pill isn’t ideal for history of breast cancer but the regular checks will help. On the bright side we are starting the adoption process next year x

[Afrohair]

It would only have been picked up if they were specialised in endo and you could have a lap to determine how bad it is if you wanted you may even conceive then or have successful ivf but you can’t guarantee that it’s the endometriosis what caused your losses lots of people carry a baby with the disease

[Tillyfloss]

hi. Hope you able to keep comfortable. I had numerous scans, ct and MRI and nothing showed just how bad my endometriosis was, even had a full frozen pelvis but my scans all came back as normal, the specialist we saw was baffled as at the time he described me as one of the worst cases he'd seen. Its a terrible disease that is almost ignored unless you fight for help. I hope you can get seen and some help with getting more comfortable. Xx

[sadievalentie]

Hi there! How are you? I hope you are feeling better. Maybe the doctors were not scanning it the right way. Some doctors are just rushing into things and don't take time out to do it step by step. If you think you are too old to try anymore then going for Surrogacy is the best option for you. The treatment is wonderful, I also had my baby through it. You won't have to deal with any pain and you will also be able to become a mother. Think about it. I hope this helps you out. Stay blessed. Take care. Good luck. Bye!

[Alyssa123]

Hi there! I hope you are doing better. It's not easy to deal with failure again and again. Every failed attempt takes a piece of your soul away. I think it's time for you to visit a different clinic. This clinic wasn't even able to identify the Endo during your treatment. It doesn't look like the staff working there is that professional. You need a good clinic to make this treatment successful. So stop wasting your time on this clinic. I hope this helps. Take care of yourself. Good luck. Stay blessed. Bye.

[LorrieWalden]

Hi there! How are you? I am really sorry that the doctors were not able to find it. Maybe they don't have much professional staff. It's hard to opt for these treatments. When you do, and it ends up like that, you have nowhere else to go. It's also important to get yourself tested. That way you can avoid mistakes like the mistake your clinic made. It's also a good thing to do some research and opt for a clinic with a high success rate. That way your chances of success are also high. I will pray that things get easier for you. Best of luck. My blessings are with you. Goodbye!

[Avourneen]

I have and had stage 4 endo at the time I went to get IVF.I had TV ultrasounds etc at two different places, both of whom offered IVF neither of them mantioned anything was wrong but as my pain got worse I went to a gynae who didn't do IVF but specialised in endo. He checked me over did an ultrasound and said I had stage 4 ovaries stuck to womb, womb stuck to bowel etc. I was alo told by my specialist that IVF would make the endo a lot worse due to all the extra eostrogen and that my womb was in such a bad way even if I conceived I would not be able to carry a baby to term.

I expect. that the IVF clinics knew this from the scans and hysteroscopy they did but they just wanted to take the huge amount of money I would have paid. I could be wrong but they did TV scans and never mentioned a thing out of the ordinary.