Newbie... Endo, high NK cells, IVF, chemical pregnancies...

Hi, not really a question as such, but was just looking out for more ladies possibly also in a similar situation and introducing myself and my journey so far!

Been TTC for 6 years. After two years we went to the fertility clinic, and did IUI, which failed, then moved onto IVF. At this point it was discovered I had severe endometriosis. IVF failed this time, but we did get 9 frozen embryos. A few months after IVF I had a hysteroscopy to remove a few small polyps. I then had my first BFP the following month trying naturally! But this ended in a chemical pregnancy.

Had to have a laparoscopy to remove an 8cm endometrioma, and then I unfortunaly I became ill with chronic fatigue syndrome, so had a break before using our frozen embryos. 1st cycle resulted in another chemical pregnancy. Had another break as had to have another operation to address my endometriosis again as had another huge endometrioma (10-12cm ) 2 more cycles using frozen embryos also resulted in chemical pregnancies again. Before the final cycle I had testing at Coventry for NK cells, and was told my results were extremely high (highest in the clinic!) but the treatment I had didn't help us as it was another chemical.

I've just had my third operation to remove yet more endometriomas and excise more endometriosis.

We will try to conceive naturally again for a few months but will look to do another, probably final, cycle of IVF.

I feel there is little hope we will actually ever have a baby together, but still have to hope for that miracle. It's just so hard to be positive and keep going! I'm sure many of you ladies understand the heartache of it all. X

13 Replies

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  • Hi Flowerpotts, thanks for sharing your story. You've had a lot going on in your journey which I can relate to. I was diagnosed with endometriosis in 2012 and I've had to have multiple scans and treatment to clear the endometriosis to give us a better chance. Unfortunately I also have a very high fsh and very low amh so my heart does ache quite a bit.

    I've started my second IVF cycle and I'm just really trying to take it easy and be positive but this journey is tough. I am praying for a miracle and I hope you have a miracle too x

  • Hi Pchin3112, I'm really sorry to hear you have also been having a tough journey with endometriosis... I hate this disease! And I'm sorry you are also having to go through IVF, as I know this is such a difficult journey in itself. I wish you good luck, and hope this second cycle is the one that gives you your baby.

    I guess you feel also things are stacked that bit more against you with the high fish and low AMH. I will be having these tests redone prior to more IVF, as it's been 4 years, I know a lot could have changed since my last 'OK' results.

    Thanks for posting... Truely do hope we both have success in the very near future xx

  • Have you ever considered a gestational surrogate? I know someone who's daughter was carried by a friend and she said it was the best decision they ever made. She only had one embryo left and luckily it took. It's not an easy decision, but if it will give you the child you want... Pm me if you want further info xx

  • Hi, thanks for the post madcatlady!

    It did go through my mind when we were down to our last few embryos, however as I had the NK cells test prior to this and followed their treatment plan, I had hoped it would mean we wouldn't have another chemical pregnancy and if we did get a BFP it would actually stay and become our take home baby!

    I don't have any friends who would be in the position to be a surrogate, even if they would be willing to take on such a huge thing. My sister would be a surrogate in a heartbeat, but unfortunately she is older (42) and has mental health problems, worsened with pregnancy (she has two children and this happened both times). And her medication would also now prevent her being able to.

    We would not be able to afford to go through surrogacy any other ways, as we can barely afford to have one cycle of IVF (as I'm part time, joint income is quite low) and I'm unsure how I would personally feel going down this option... It would take some consideration from us both.

    Xx

  • Hi Flowerpotts. Only just read your post, and realise that you have been through soooooo much with your endometriosis. On top of all your already done investigations and treatments, I wondered whether you have had your immune system checked out, considering you suffer(ed) from chronic fatigue syndrome. Just thought it might be a bit low?? Have a word with your clinic if you have not already had it checked out. Thinking of you. Diane

  • Hi, thanks for posting. When you say tests for my immune system, were you think of any specific tests?

    I had various bloods. Etc when I had CFS symptoms first present... And I had bloods done through the recurrent miscarriage clinic which all came back fine, except a slightly raised homocysteine level and I now take 5mg folic acid as a result. I also had low vitamin D and have been taking supplements to bring this back to a normal level.

    We are not under a clinic at the moment, as our last treatment was all NHS, and now we are looking at paying private having had our full NHS funded IVF cycle and FET's. We haven't decided on which clinic to go to yet, and as I'm only 5 weeks post surgery, we can't start treatment quite yet.

  • Hi Flowerpotts. All clinics have their own set of criteria regarding having immune testing performed, and are often not considered a priority with NHS treatment. I am sure that your clinic should be able to offer them to you, but of course you are best guided by your consultant on his/her recommendations. If they don’t have the facilities to do this and feel it may be beneficial to you then they will be able to arrange for you to have the blood taken to send off to an appropriate laboratory – at a cost. Unfortunately, all the immune problems including looking for natural killer cells have not altogether been proven to cause recurrent treatment failures or miscarriage, and this may be the reason they don’t offer some tests. However, if they were found, then you would probably be offered a treatment involving low dose soluble aspirin, and/or heparin or intra venous drugs such as immuno-globulin and also dexamethasone and prednisolone (forms of steroids). The side effects of their use, you would need to get thoroughly explained to you. I have heard increasing successes with couples who have had repeated failures undergoing treatment following a positive diagnosis to the natural killer cells and have gone on to have ongoing pregnancies and births. Sometimes, as explained, the “above” treatment has been offered without testing first. Remember that if you do decide to go through the tests, they can be expensive if they do have to be sent away for testing. Chromosome testing on both partners might be another option, so that if a defect were to be found, PGS (Pre-implantation Genetic Screening) could be offered to ensure that “correct” embryos were transferred. Hope this doesn’t confuse you too much, and good luck with whatever you decide. Diane

  • Hi Flowerpotts, I too was diagnosed with high nk celld from coventry, 1 chemical pregnancy, 1missed miscarriage at 9wks and 2 ectopics. I have had to had both tubes removed and currently just coming to the end of my 1st 2ww from ivf. I had to start taking steriods from day of transfer for the nk cells. I currently have a bfp, however praying its not a chemical as started spotting yesterday and today. Hoping its just implantation bleedingxx

  • I'm sorry to hear you have had such a tough journey, and are having to have IVF. Also sorry about the high NK cells result.... Mine were done at Coventry and my result was 55.05% (that's not a typo by the way.....) I will be having steroids on our next IVF cycle as well.

    It's fantastic you have a BFP.... However I know that the spotting would make you worry. I do know it's quite common with IVF though, and hopefully it doesn't result in another chemical pregnancy for you. So hope it stops soon and you can stop being concerned.

    I will keep my fingers crossed it is just implantation bleeding and nothing more xx

  • Aww thankyou flowerpot ☺️ Your nk cells are high. Mine are 15%. There was a documentary on tele last year called first heartbeat and it tracked a couple through miscarriages and pregnancy. She was diagnosed with high nk cells, hers also being 55% she went onto have 2 boys after 4 miscarriages, so there is hope 🙏 Good luck for the future xxx

  • Aw, I didn't see that documentary! But it's good to know there is hope with such high NK cells. Will see if I can find somewhere to watch it online. X

  • Theres parts of it on you tube. It was on the channel, TLC and I knoe sky also showed it. It was aired in October to promote miscarriage awareness. Unfortunately its not worked for me this time, currently miscarrying 😓Xx

  • Thanks, I will have a look.

    I have just seen your post, I'm sorry to read you have started bleeding. however I had a look at your photos of your pregnancy tests and it really looks like your hcg level is rising as the lines look consistently darker each day. I've only just joined this forum, but did you have one or two embryos put back? I know the bleeding instantly would make you think it's a chemical, but occasionally ladies bleed for various reasons and the pregnancy still progresses. Some can bleed when one embryo fails to implant. Some also can have a patch of the uterus that bleeds as well. It's more common with us IVF ladies.

    It's such an uncertain time... So I will be keeping my fingers crossed this bleed is not what you think. Massive hugs, I know how hard this is as been there several times xx

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