Stage 4 and scared....no....make that terrified!!!

18 months ago we made the decision to try for baby. I'd been on the pill for around ten years on and off and as a nurse i knew that it may take some time for my body to settle down and adjust to the differnce in hormone levels. I had my first period off the pill in june on time and without any issues and so lulled myself into a false sense of security that things were going to run smoothly.....boy was I wrong!!!!!

The next 8 months my cycle was all over the place ranging anywhere from 28 to 49 days. My periods themselves were unusually light but I had this strange feeling of fullness and this really heavy feeling in my lower abdomen as if I should be gushing. Again I told myself it was my body just adjusting to life without the pill but made an appointment with the GP for some reassurance. He did some bloods to rule out PCOS which came back fine and agreed with me that things would settle down in time.

Over the next few months my cycle did seem to fall into a pattern but my periods seemed light and would last longer and I still had this feeling of fullness. Then in September I convinced myself I was pregnant. I was so tired and emotional and I had some spotting a week before I was due on which I thought was implantation bleeding. But of course the pregnancy tests were negative. A week later I was still spotting and the tests still negative and then came the agony!!!! Pain like I had never felt before as if my hips had been clamped in a vice and my pelvis was being crushed. I should of gone to A&E but I thought they would just tell me I was miscarrying and send me home because there was nothing they could do. After 3 days of agony I went to see my GP who said it was unlikely and sent me for an Ultra sound scan.

The scan showed a small cyst on my left ovary suggestive of endometriosis. I was relieved to find out that there was a reason as to why I hadn't fallen pregnant and was reassured by my GP that if it was Endo it was only in its early stages and there was nothing to worry about. I was referred to gynae and put on the waiting list for a lap. Over the next few months my periods became more and more painful and I wasn't able to function despite taking regular codeine, naproxen and paracetamol.

Then in January I had my lap and my life was turned upside down!!!!!

I remember waking up in the anaesthetic room and asking the nurse what had happened. She said I had endo that I needed IVF and an MRI scan but she couldn't tell me any more. I just burst into tears. I was taken back to the ward where the consultant came to see me. Straight away he said he was in complete shock by what he had found as he never expected it to be that bad. He kept reassuring me that it wasn't cancer and said he wouldn't go into too much detail as I wouldn't remember it with just coming out of theatre,but basically my bowel was all stuck together and then stuck to my uterus and bladder. At some point I would need major surgery involving gynae, gastro and urology surgeons to remove the endo which could result in a bowel resection and colostomy and my only chances for having a baby were through IVF. The only question was what to do first.

I spent the next 4 weeks with this little snippet of information in complete shock. I knew there was a chance that there maybe an issue with my fertility but I never imagined it could be this bad. I went to see the consultant and he confirmed that I had stage 4 endo and that my tubes were completely blocked so advised to start IVF straight away. But then came the next challenge.....funding! NHS won't fund it as my partner has a little girl from a previous relationship. Gutted isn't the word!!!!!!!

Thanks to our wonderful family we have the money to fund one go ourselves and have our first appointment at the clinic next month but I am absolutely petrified! If this doesn't work first time then basically I'm screwed. We don't have the money to try again. We can make an appeal for NHS funding but time isn't on my side. Since my lap my symptoms have improved slightly but with every month that passes the chances of the endo getting worse increase. my consultant has already said that harvesting eggs may prove difficult because of my condition and that if things did get worse I would have to have surgery sooner rather than later and there is a risk that I could end up losing my overlies all together. I just don't know how to think or feel at the moment. I turn 30 in a few weeks and get married next year. It should be the happiest time of my life but I feel like my life's on hold and so full of uncertainty. My family and friends have been so supportive especially my partner but they don't really understand the extent of what I'm going through both physically and emotionally

13 Replies

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  • I am so sorry .

    If you need to talk , you can send me messages .

    I think of you

  • I'm really sorry. I think most of us go into a state of shock for a few weeks after finding out we have Endo and to what extent but it must be very scary to hear everything that you did. Good luck with ivf, have you thought of having acupuncture at the same time? I'm having acupuncture now to help me to conceive but I'm not having ivf. Most of my acupuncturist clients are having ivf as it can help with the hormones and also implantation (from what I understand). It's very relaxing, slightly odd when you can feel your body reacting but not in a bad way. I know it had some effect on my body almost immediately.

    I really hope everything works for you. Xx

  • I read this story with a heavy heart. I really feel for you, but if there us anything I can do, even if its just another ear to rant in, then please message me

  • i am so sorry to hear your story, but will remain hopeful for you.xxx

  • Big Hugsxxxx i am sorry,thank you for sharing you stories.. we are all here to talk and listen, be strong, i hope your fight get easier and you feel better soonxxxx

  • Thanks ladies. Means so much to know there are people out there who know what I'm going through. And the same goes for you that you can message me anytime ??.

  • So sorry to hear that , Stay strong - God bless and God help U !

    I have 3 stage endometriosis , some how It made me learn about compassion to other people who seek and feel alone.

    Everything will worked out ! Pray if u can , there are catholic forums where people will pray for u , it does help !

    It helped me a lot ! Now I have 2 beautiful children and witnessed personally miracles.

    Go to to a local christian church having people who genuinely will want u to get better .

    Books like Proof of Heaven Dr Eben Alexander completely reassure me.

    Wish u better .

  • It sounds like we are in a very similar position. I had beeen on the pill for a number of years and come off it about 18 months ago to try for a baby. I am 33 now so as it had been over a year I wnet to see the GP and she started the test procedure. Seperaately (or so i thought) my periods had been getting progressively more painful, like you I thought my body was adjusting. Around December just gone i felt soemthing was not right, i was always tired and had the worst stabbing pain during intercourse. I presented all the symptoms to the GP and they send appendicitis go too A&E. I was admitted and 3 days later they said it may be a cyst. All of the time my pain seemed to be there niggling away sometimes it was intense and sometimes I was just aware of it. In the end we went to see someone privately becuase the NHS was so desperately slow. She conducted a tran vaginal ultra sound and said she thought it was endometriosis but would need to do a laparoscopy to be sure. We were also told at this time IVF would be an option but it was unlikely to work due to my FSH levels and the number of eggs I had left. She because of those 2 factors we too fell outside the NHS range and would have to self fund. Devestated does not really cover it. I had the laparascopy on March 11th (privately, we would have had to have waited until the end of may and the pain by now was unbearable and debilitatiing). The la showed i too have stage 4 endometrosis, it has also attached itself to my bowel. She removed it from my tubes and overaies but left the stuff on my bowel as it was not here area of expertise and not yet causing me any problems. I have no idea how long I will be pain free and we now have to make that decision to pay for the IVF (which we cant afford and has a low chance) or adopt. All the while deal with the worry of how long it will be before it is ack and I am in pain again.

  • Prezza5 I quite literally feel your pain. It's the uncertainty of everything that's makes it so hard. I'm so glad to hear you are pain free at the moment. Unfortunately for me my consultant only removed a small amount of the endo during the lap so although my symptoms have improved slightly I still have the monthly agony and that's why I can't really afford to wait and appeal for NHS funding. As even if I got it no doubt I'd be put on a waiting list and with not being on any treatment to control the endo at present with every month that passes the chances of the endo getting worse increase and the IVF working decrease.

    The decision to adopt is a big one. Me and my partner have discussed it briefly and although before I found out about the endo I said I would adopt if there was an issue I'm not so sure if I would now. But then again we might change our mind again if that's our only option. But for me I have a step-daughter who I love as my own and although she does not live with us we have a great relationship. At the end of the day you've got to do what's right for you.

  • Sorry to read your story and my thoughts are with you.

    Just do not give up hope. 3 years ago I was in similar situation, docs painted very bleak picture diagnosing stage 4 and infertility. I was distraught and had surgery to seperate bowel bladder and uterus. Full team of surgeons on stand by but it went much better than they thought and amazingly we now have a 2 year old conceived naturally.

    So miracles happen and all must not be lost. Stay positive, if you want any more help or just chat message me anytime xxx

  • Thanks loucom. That's amazing! Really has filled me with some hope. Hope you are well x

  • Hi nat_nat i am sorry to hear your story but i would like to tell u that i am also int he same boat as u with stage 4 endo all stuck together. aged 42 with two children aged 10 and 16 and i was trying for another but have been told by my consultant (she is really good) that i should be happy with the two i have and leave it at that. i am due to go into hosp on 22/4/13 for a hysterectomy not sure which kind but will find out on the 9/4/13. please hang in there and pls feel free to email me.take care.

  • Hi reception. Thanks for sharing. I hope your surgery goes well. Keep me posted x

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