Need advice, sorry for the long post!

[Sez1988-]

Hello, first time posting, been holding off a while as there's a lot to tell. But really do need some advice as I feel so lost and confused about what to do.

In 2014 I suffered a miscarriage at about 8 weeks, this is the first time I had the pains I am about to describe. I have always been able to tell when I'm ovulating, and the first time I ovulated after the miscarriage, I remember getting this horrendous pain in my side so suddenly, and so bad I couldn't even breathe deep or cough without feeling like it was crippling me. In fact it was that severe I went to A&E (it takes a lot for me to go near a hospital) but I was never seen after several hours of waiting, even though I was laid out on the floor at one point with the pain, and painkillers don't touch it really, so I went home and hoped for the best. I paid for a private ultrasound scan the next day which showed a "functional cyst" on my ovary and the pain was put down to that, and it had gone by the next day just as quickly as it came. I never had the pain again with my following cycles.

Fast forward to 2016, I had a baby, a straightforward birth really apart from needing to be cut as he got stuck. No pain relief away from gas and air, I have a high pain threshold. Shortly after, within a month I think, I was getting a pain up my back passage after being sat with my baby asleep on me for an hour. I put this down to having stitches after the birth and being sat in the same position for so long. I had 3 infections in this wound that were treated as well which probably didn't help things, and also needed an injection to help get rid of the scar tissue as I was also getting pain in the scar afterwards. However I kept noticing this pain coming back in my back passage and also my lower side (it seems to be one side at random never both at once) every now and again, I am assuming it was monthly with my cycle but didn't realise this at the time.

Eventually I saw a consultant at the hospital when my baby was about 8 months old regarding these pains that were getting increasingly worse every month, and she said it sounded like "classic endometriosis" and that it was on my bowel most likely too and that explained why the pain was so strong up my back passage, and why my stomach is so upset whenever this flares up, as I usually end up with diarrhea and needing to use the toilet a lot. It's also worth mentioning this all seems to be affecting my bladder too, I randomly get shooting pains up my urethra a couple of times a month when I urinate, and a feeling of irritation down there after peeing. I don't have any water infections it's been checked so many times, but do seem to get thrush every now and again since all this started and it's always been treated. She said she counldn't officially diagnose endo without doing the laparoscopy, and advised to try some treatment first as she didn't want to rush into the surgery because of the risk of cutting a main vein or something, but if it got worse and treatment didn't help to get referred back to the hospital.

So far I have tried the pill for a few months, the implant for 3 months (which was horrendous), the contraceptive patch, and the mini pill, nothing has helped at all and away from the combined pill I just bled more. I was also offered the depo but the doctor said as my reactions to the other contraception were so bad, it was probably not a good idea as once it's done I would be stuck with any potential side effects for 14 weeks, so I wouldn't risk that anyway. The only painkillers I have been given to combat it are strong codeine, which only leads to me being like a zombie and then unable to go to the toilet which obviously makes the pains worse anyway! So I don't even bother taking them. It's been suggested next to try the mirena coil, but palpitations seem to be a common side effect of that and I suffer badly with them already due to generalised anxiety disorder and OCD that I am struggling with at the moment, massively fuelled by how bad the endometriosis symptoms are. It is controlling my life, and I struggle now to leave the house due to the fear of the symptoms starting as it's always so quick and sudden. My husband has had to give up work because I cannot look after the children properly on my own anymore, the pains are so bad sometimes I struggle to even get out of bed, and it is at its worst when I ovulate, and then terrible again when I am about to have a period then flares even more when I actually come on until the bleeding starts getting light towards the end of the period. I can't even push to wee on the toilet when it flares up without gritting my teeth, and I can be laid out on the floor scared to move as I know it will make the pains worse. The bleeding can be very heavy and with quite a lot of clots too.

I am going to try and get referred back to the specialist at the hospital next week, is there anything I could say or suggest to them to get this done quicker? Is it about time they did the laparoscopy now? Do you think it does sound like endometriosis? I just feel so lost with all this and it's ruining me. I have no life now and I feel so angry and frustrated all the time. I don't want to be a zombie on painkillers all the time, and I honestly have felt like just telling them to take my womb out as I can't cope with it, but due to my age (early 30s) they won't do it anyway I expect.

Sorry for this being so long anyway, I have been holding all this in for months now, I didn't mean for it to be so long! I've no one else to turn to really to ask for help!

[Meerkatcrazy]

Hi

Sorry to hear that you are having such a tough time. Many of us on this site can relate to what you are describing. I was officially diagnosed with stage 4 (means its in the bowel too) endometriosis in Dec 18 after MRI, having been told about 5 or 6 yrs ago that it was highly likely. I never pursued the diagnosis then as the pain wasnt so severe. Fast forward a few years and its been a very different story. It certainly sounds like you have stage 4 endo, though obviously, there could be other reasons for your symptoms. I can relate to not wanting to leave the house for fear that the pain will strike and I wont be able to get home. I was offered an op to remove as much endo as possible- jointly performed by gynae and colorectal surgeon or a total hysterctomy or Zoladex implant injections to switch off my ovaries to put me into a chemical menopause. Im 44yrs old, have 2 older children and hubby has had a vasectomy so haven't tried other contraceptives to comment on their effect. I chose zoladex as I feel menoupause could happen naturally soon enough (my mum was 45). It involves a monthly or 3 monthly injection into the abdomen. I do have menopausal symptoms but take tibilone - a HRT - to help. I started treatment 2 months ago. This drug has given me my life back. I have no endo pain, apart from just after 1st injection, when I had a heavy period (was due anyway), no bleeding. I was bleeding 2 wks every month before. Its really just a 6 month treatment, though many people are on it for years. They can do a hysterctomy at your age, should you want it but obviously, you need to decide whether your family is complete first. Zoladex is not permanent so fertility can return after you stop. Having the op to remove all endo, shouldn't affect your fertility. All options have pros and cons. There are risks with the zoladex. I'm not sure if you can rush the referral, I was seen pretty quickly anyway. Have a look on the BSGE centre website and find the accredited endo centre in your area and the lead gynaecologist and ask for a referral to them as all gynaes are not equal in this specialist field. Good luck and take care xx

[Sez1988- in reply to Meerkatcrazy]

Hello, I am so sorry for my delayed reply, I have been suffering so much of recent. This past week of ovulation has given me suicidal thoughts I have felt that bad, if I'm honest, though I don't feel as bad now it has passed. I can't live with this anymore it's just so debilitating and I am scared to death to leave the house as it flares up so suddenly and quickly, so I am becoming a recluse and having panic attacks just doing the school run with my toddler.

I am also sorry to hear about your symptoms, but in a strange way I am happy that you can relate to what I am saying if that makes sense? You've tried a lot of things by the sounds of it. I wish none of us had to suffer this horrid horrid thing. I definitely at my age would not want to be trying those hormones and going into a menopause, I don't think I could mentally cope with that myself. I can see why some women would try it though, but reading the common side effects of that I think they would outweigh any potential positives for me, as I seem to be really sensitive to any sort of hormonal contraceptives and medication. I don't know why!

I did manage to make it to the GP surgery on the day I posted, and I did get a referral for the endometriosis centre (that website you told me about was very useful so again thank you) at my hospital, however the bad news is that it is at LEAST 2 month wait! I could cry, and I think it is awful to leave ladies suffering as much as I am for all that time, what are we meant to do whilst I am sat here with no life and in constant fear almost. My GP said she can't get me in any quicker. And who knows how long I will have to wait after that to actually have the diagnostic lap. I can't even get this mirena coil fitted for another 5 weeks either, as I have to give my cervix time to heal after having a loop diathermy to remove pre-cancer cells in February, which funnily enough seems to have made my endo flare up as bad as it has this month, I have only just stopped bleeding from that treatment too which for sure has not helped with everything.

The only other thing I was offered at the GP's to help me cope in the meantime was mefenamic acid, which just seems to give me awful reflux/heartburn and at best just takes a bit off edge off the pain so I don't want to take that again, and I was offered amitriptyline but the last time I was on that I bloated up to nearly 20 stone, so I would never touch that again as being so overweight caused me more health problems, and I'm 10 stone now and happy with that.

Sorry for moaning on, I'm just in a sad mood and probably feeling too sorry for myself!

Thanks again for your reply Meerkatcrazy xx

[Meerkatcrazy in reply to Sez1988-]

Feel free to have a good moan - it does us all good! Have a look on this site for the different pain relief options. TENS machine could also be worth a try. Are you getting support from partner, family and friends? 2 months seems like forever when you are in pain but it will soon be here. Ive used co-codamol 30/500 and naproxen for pain relief. Nothing got rid of the pain but it certainly helped. Dreading stopping zoladex as I could well be back to how I was previously. If I am, I will almost certainly opt for surgery. Take care and stay in touch xxx

[Sez1988- in reply to Meerkatcrazy]

Sorry again for me taking ages to respond! I am glad the hormones are working for you, it's interesting as I have found out since I last posted that my aunt actually had some hormone injections for what they assumed was endometriosis (though she was never officially diagnosed and she has had a hysterectomy now anyway) but they sadly didn't work for her. She said she was very achey as if her bones were hurting and just felt zapped out all the time with no energy, so she never had another after the first injection as she felt so bad just off the one. It wasn't called Zoladex either but I can't for the life of me remember what she said it was called now. I don't know how we can be expected to have a normal life with all this!

To answer your question about support my husband gave up work and became my carer really when it started getting noticeably bad and I couldn't look after our baby on my own anymore, I feel guilt about that every day, though he says he doesn't mind but I do. I hate that we now have to claim benefits, it doesn't feel right. The only family we have nearby are my in laws, and they do what they can like taking the kids to give us a break and watching them when we have appointments, but we have no one else as my family is over 50 miles away, and I don't get to see them often.

I did use a TENS machine once for early labour with my first, I can't remember it doing much but this is going back 14 years ago nearly, I expect they will be much different now! I will look into that though and see how much they are now, thank you. I hadn't even thought of them!

The good news is I was offered a cancellation appointment for just over 2 weeks away at the end of last week, I was so happy I could have cried as sad as that sounds. I just hope now I get a good specialist who listens and takes me seriously.

I have been thinking a lot about my options, and I genuinely am considering pushing for the hysterectomy. If I am being realistic, even if I wanted another child right now it would be impossible with all my health problems, and I am terrified of getting pregnant on the times I do attempt to do anything with my husband, because things are so bad at the moment we simply can't do anything anymore really when we try with all the pain and how uncomfortable it is down there now. I don't think I feel really comfortable about the thought of the Mirena if I am being honest, as it isn't something I can just stop myself, and my experience with the implant was so horrible it put the fear of god into me and it was not good having to wait days to have it removed, I felt close to cutting the damn thing out myself as I was going crazy. So if I had the hysterectomy it'd be over then wouldn't it? And I wouldn't have to be stressing over hormone treatments, planning my life around endo flare ups, and worrying about contraception, especially when my body seems to react so badly to hormone treatments.

Thanks again for your response and sorry if I whinged on again! Take care xx