I'm crippled with pain again and it feels like it's affecting every part of my life, I take 900mg of gabapentin every day. It's making my hair fall out, I have sore spots on my scalp and my chest, it makes me angry and short tempered and depressed. I had a lap to remove stage 1 just over a year ago and for the last 6 months it has just got worse and worse and I don't know to do, my consultant told me it couldn't grow back that quickly?! Is is true? Has anybody else experienced anything similar? I'm struggling with stomach issues after years of naproxen and my bowels are terrible, I have pain and bloating in a cyclical pattern.
I just feel completely lost, I can't imagine feeling any worse than this.
I'm seeing my consultant on the 9th November, what can I say to get some help?!
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Lilyflower1989
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I'm not sure how quickly it can grow back, but this is exactly what happened to me. I had ablasion treatment (from a general gynae) of stage 1 endo in August last year which removed endo from my pelvic wall and the front of my womb. I felt great initially then about 6 months later started to get symptoms again. I went back and was told by two separate doctors that the endo couldn't have grown back so quickly and that they wouldn't do surgery again. I was given amitriptyline, vaginal dilators for the pain I was getting during sex, told I would have to try the 6 month injections...
I was then referred to a specialist privately and he suggested the endo probably wasn't all removed and he would suggest doing the surgery again but removing the peritoneum, cutting away the endo rather than the ablasion treatment and fitting me with the mirena coil during the procedure and doing a hysteroscopy at the same time. I had the surgery two weeks ago and the surgeon found endo on my bladder as well as tucked down the back of my right ovary and I think somewhere else (I was a bit out of it in recovery!) I have my follow up appointment on 31st October so I'll find out more then.
My guess is that the endo hasn't grown in that time but was missed by a general gynae that didn't do a thorough enough investigation first time round, but of course I won't be sure until I get a chance to discuss with my surgeon.
What did you have done first time round?
I really feel for you. It sounds like you're having a terrible time.
Yes I had my lap nearly two years ago and had lap in 2015 I only three months of being pain free I ended up in hospital in May 2015 and gynae said I'm not convinced it could grow back that quick I was treated for aheadions on pouch of Douglas and endo in my womb but the mount of hospital admissions Iv had have been a waste of time even seeing a endo specialist was to I got refered to pelvic pain management and they can't do anymore for me so refered me back to gynaecology known my luck it will be a waste of time like it always is just giving up all hope to be honest as sick of been giving the run around by doctors and gynaecology xx
I have a similar story to you. I had my first lap last November and the Gyno said he removed all the endo and was confident he got it all. I was so relieved and looked forward to years of pain free life. Then in January at my follow up appointment I mentioned that I could still faintly feel the same ache. He dismissed it and said maybe it was coming from my bowels, even though it was the same ache I had felt since endo pain turned up and have never experienced before. He said he would see me in May to see how I was doing. I was in pain most days again and he did an internal ultrasound and saw lots of free fluid in my pelvic area and then admitted that the endo was back. I have been on the pill since and it has got worse and worse. It's really affecting me now and I have my next appointment on the 8th November so will know more then. I don't see how it can grow back this quickly to effect me as much as it did a year ago but it is as bad. Either it wasn't all removed or it does grow back super quick in some cases. It would be great to catch up after both our appointments and see what the consultants say. My one question is why do they put you on strong medication in if they deny there is any endo there. What are they treating? It makes no sense to me.
Good luck for your appointment and I would really like to discuss afterwards.
Thank you for replying! I'm dreading my appointment, I'm being seen in a BSGE centre but whenever I go for my appointments (roughly every 3 months) I go with the intention of demanding more support but talking about the pain and how it's affecting me just leaves me a blubbering incoherent mess, they mention the chemically induced menopause every time but I'm so scared of this, I've just turned 27. Can I ask for some scans? I just can't handle any more painkillers! I've been taking them for about 6 years and feel they're affecting me psychologically and I dread what long term affects they have! Are you taking any pain relief?
Good luck for your appointment, I would definitely like to discuss with you afterwards. I find this illness such a lonely place sometimes
I only ever have Ultrasound scans to see what's going on. I think they can send you for MRI scans as well if they think the endo is interfering with other parts of the body.
I take Zapain (which is codine and paracetamol based) with ibuprofen. I limit the amount I take as I don't want to pop pills all day everyday. I take one Zapain with one ibuprofen tablet and try to only take them when I really can't cope with the pain and the heat pad isn't helping. I went without any painkillers today as I try to have a painkiller free day every now and then so I don't get addicted. But it wasn't fun struggling through the day at work without any pain relief. I have my heat pad on almost all the time whether at home or work which does help with the milder pain and stiff feeling in my groin and lower back.
I guess I am luck that my Gyno has so far seemed to support my wish to try and have a baby. I'm 34 and have been married for 3 years in December and we haven't managed to fall pregnant because of the endo. So when I go back next week I suspect I am heading towards my second lap and I have to hope it will work better than the first one and give us a bit more time.
I know what you mean about the loneliness. No one really understands the disease unless the have it and that makes it difficult to get strong support and people mean well but don't really know the heartbreak and pain endo suffers live with everyday.
Good luck for your appointment next week and let's chat afterwards.
Hi I agree it can come back. Have you had a consultation around pain management? I dont know how long you have been living with pain but as I understand it if you dont treat pain properly in short term it can cause other troubles. I have found heat pad, tens and mindfulness of great help. The mindfulness therapy helps me accept where my life has been affected and come up with strategies for times pain is at worst. Like in traffic. I also use various medications that I havd tried one at a time to see what works for me. If the gabepenton is not working at high doses is it time for your doc to offer other meds so you can also live while you navigate the medical system to address endo. Are you able to access a pain specialist? I'm no doctor. My experience is I live with stage 3 endo and severe spinal condition. Hope you feel better soon & get some relief.
Thankyou, yes it is a great forum for support & info. I can only recomend to try and stop and start medication one thing at a time. Its so personal how you react. Including hormone treatments. I was allergic to several pills, to the estrogen. I am on one that uses another kind, called Qlaira it has a progestin, dienogest in it too, used in Europe a long time to treat endo. You said your hair is falling out? I have read several times this can be hormonal too. Did you change something with your hormones treatment aswell?
I also do something called 'pacing' where you work towards doing everything in your life, but find the way to do it that doesnt hurt you, then slowly build up the level you are doing things from there. Easier said than done but it is a pain management concept thats helped me be happy in my life despite the pain and horrid medications. Hope you feel better soon 😄
It can grow back that fast, my daughter suffers terribly from endo and she had a lap June 21st and ended up having a second lap September 11th it was back. We are struggling to find the right bc pill for her life to try to control it.
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