Do I have surgery again? Sorry long post just feel so deflated. Advice needed

[JadeH92]

Feel at such a loss!

I visited the consultant yesterday (18.12.2019) but this time on my NHS appointment.

He requested I take all my previous appointment/surgery correspondence so he could get an idea of what's going on.

I get that he is the only "official endometriosis specialist" I have actually seen over the last 12 years and importantly told me he knows my pain is real (which has not happened before).

However, I still feel he has dismissed my pain slightly. He told me that I have only ever had "superficial endometriosis" (which I am glad about I would rather have none). However, upon reading this, his attitude kind of changed, he said he feels the pain could have been added to by my previous surgeries which I totally get because of scar tissue and adhesions.

I feel like my life is on hold because of this disease (my IVF actually is). My body is in too much pain (which did increase following my first IVF transfer which ended in a miscarriage in August) for me to carry on with the IVF so I thought treating the endo was the only option.

In the past I have had several surgeries and each time got some relief for a good few months up to 12 pretty much pain free. My plan was to have the surgery have the endo removed (if it is back) recover then have my 2nd IVF transfer as soon as possible. But now I am worried that it is surgery that has caused these issues in the first place and being operated on by people that was not qualified enough...

I am booked in for a hysteroscopy the end of Jan 2020 and I am awaiting an MRI scan also to check that my Adenomyosis hasn't gotten any worse. He has told me to have a think over Christmas and let him know about the surgery when I see him in Jan.

Any advice is really welcomed.

[thelordsanger]

Hi can I ask is your hysteroscopy outpatient because if it is (only my advice) cancel it emediitaly as it we be exstreamly pain full because of you endo it,s always best to have it removed from what I have seen surgerys do not caurses these issues eno seems to come back again and a gain but 12 moths seems pritty quick I wish I could say every thing will be ok but your plan semis to be the best

[JadeH92 in reply to thelordsanger]

Thank you soo much for your reply. Sorry for the delay been so unwell I've had to cram all the Christmas prep in over the last few days. Yeah it is outpatient, I did tell him when I had the coil inserted a few years ago at my Drs it was a nightmare. It took her over45mins and was excruciating, to the point when my body rejected it a few days later my G.P refused to do it again and stated it needed to be under general.... he just said he would give me loads of local anesthesia. So I am not looking forward to it. He has told me to take paracetamol and ibruprofen 1 before hand. Is there any reason I cannot take my codeine and paracetamol instead? That is what I am thinking I cannot go on like this and it has been 3 years since my last surgery and since then I have had a lot going on hormones wise so I am presuming it will be back. I just worry so much that I could be doing mor damage.. I have always been pretty calm in the past when it comes to surgery but for some reason this time I am proper freaking out! Thank you so much for your well wishes and again for your reply. xx

[Afrohair]

I would say I know your worried about another lap I can kind of relate as I had a misscarrige and the pain came back two fold I like you now feel I’m in so much pain I don’t know if I could even carry again and think endo maybe worse now if I did carry it might not last. I’ve decided the best option for me would be to treat the endo first who knows you may conceive naturally !I’ve had two open surgery’s on my abdomen already non endo related so understand you not wanting another operation and I also worry about what ifs and more adhesions if this lap doesn’t work!I’m not entitled to ivf on nhs so a lap would be my only option at the minute my life is on hold too waiting and I haven’t even got an transfer to specialist yet and nearly 35 I feel your frustration good luck with it all.

[JadeH92 in reply to Afrohair]

Thank you for replying! Like I said above so sorry for the late reply been trying to get sorted for Christmas. I am so sorry for your loss! That was my mind set exactly, I was back taking my Zapain which I am in too much pain to stop and I know when we are going through the treatment they only reccomend paracetamol and the zapain only just about touches the side so paracetamol alone wouldn't! My heart goes out to you because the feeling of your life being on hold is just such an empty feeling and on top of that you have a constant reminder which is the pain you are in when you open your eyes. Reslly that's no good! Have you found a specialist in your area? You can just ask your G.P to referr you to one of those hospitals and specify which consultant. I really hope you start your journey soon and that surgery helps your pain and also conception! Take care of yourself! xxx

[Afrohair in reply to JadeH92]

I have gone to a private specialist bsge who also specialises in fertility as they are not much help at g.p I’m waiting to see him my gynaecologist would not refer me yet !keeps saying I need mri.ive been so busy this Xmas too it’s mad this time of year!

[Hidden]

Oh lovely I hear you. It is always a worry when it comes to another surgery.

However you've said he's an actual endo specialist so there's a few positives to that. He can free adhesions if they are there. And he will use a barrier gel to prevent any further ones. Be sure to ask though, but any decent specialist uses the gel.

Sometimes they don't think when they speak. Again, any decent specialist would know that the amount of disease does not correlate to the amount of pain. You can have stage 4 and be pain free and not even know. And you can have a few dots and be crippled. I'm sorry he dismissed you in that way. But sounds like he's either forgotten his basic training or didn't communicate it well with you.

I would always suggest surgery. I know for me when I was waiting for ivf they refused to see me until I had another surgery. It had been 2. 5years prior for me. I also have moderate adenomyosis so I understand the level of pain you must be in. It's good they are checking it. Mine progressed to moderate from mild in under a year. And a large adenomyoma developed too. I was told I wouldn't concieve naturally anymore. We were offered 3 rounds of ivf and one of icsi and unlimited iui. I had 3 losses in 3. 5 years. One at 16 weeks. That was beyond devestating. That's how I found out I had endo.

Anyway, I was down for ivf and was literally due to start treatment on 10/12 this year as we had done all the prep. A day or two before I felt really funny and relaised I was pregnant. I'm only 7 weeks but recent scan looks good. I had a recent surgery a few months ago which is what I'm sure helped. Mine was a bsge specialist. So the moral of my story is that surgery does help women concieve naturally. Even in the worst of cases. Especially if done with an expert. Wish you all the best and all the baby dust in the world

[JadeH92 in reply to Hidden]

Hello! Thank you for replying! This post has actually given me a little bit of hope which was 100% needed right now so thank you. He has said that he can use an self-adhesive film, he suspects my right ovary will be "stuck" again because of the right sided pain I get and the fact it has been "stuck" before so he has said even if there is no endo he will remove some of the adhesions but only if he feels they will not cause further pain etc.

I know I don't think he did think, he stated the histology reports from one of my surgeries (he could only get hold of one) that there was no endometrial tissue found when I asked him how for the last 12 years I have had several laps which have all removed "endometriosis" and have all the symptoms if I "don't have endometriosis". He then explained that when the samples are burnt away it can kill the sample making the histology inaccurate therefore he does believe I do have endometriosis but not the "really awful type". At this point I became emotional and my partner started talking saying he believes I am not the same person anymore because of the pain my mood is low etc but I am the strongest person he knows so therefore he feels it is really awful regardless of the severity inside.

I am so sorry for your losses. That is amazing news Congratulations! Thank you for your well wishes and support and I wish you a very happy and healthy pregnancy. Take care! xxx

[Hidden in reply to JadeH92]

I'm so glad it gave you some hope. Sometimes that's all we need. I honestly never thought it would happen for me without ivf. Surgery can help massively. And even removing adhesions can bring such relief. They can be worse than the endo at times as its literally your organs fused together. I hope you can take care and good luck with it all