Log in
Endometriosis UK
42,665 members36,082 posts

Help, I don't know what to do next...

I really could do with some advice. I was diagnosed with stage 4 endo nearly 20 years ago, I'm now 43! I have several laparoscopic surgeries which only provided relief for a few years. Five years ago, I underwent extensive surgery to 'unstick' my bowels from my uterus and I now suffer from IBD and experience chronic bowel pain with my period every month. By following a strict endo diet (no gluten/red meat/dairy/soy) and taking NSAIDs for my periods I have managed to live fairly well over the year with the pain, however things have started to deteriorate. I now have stomach ulcers so can no longer take NSAIDs and codeine results in constipation which aggravates the bowel pain further. My GP has run out of painkiller options. My (unsympathetic) consultant believes that either a total hysterectomy, going on the pill, or putting myself through chemically-induced menopause are the only options left open to me. All of these options terrify me, is there anything else I can do or am I at the end of the road! I really don't want to take chemical hormones as I like my mood and don't want it changed, but I scared that a hysterectomy will now reduce the bowel endo pain. Thank you.

21 Replies
oldestnewest

Hi there! Sorry you’re having a tough time. It’s a really frustrating disease with few great treatment options. I was diagnosed with stage 1 endo so luckily not everywhere but unfortunately on nerves which led to damage to motor nerves to my leg. I have constant back, leg and buttock pain. Surgery couldn’t access this endo so my only option was the injections to induce menopause. Drastic but I couldn’t live like I was. Contraceptive pills don’t agree with me and affected my mood badly. The injection and HRT combination I’m on honestly don’t at all. I feel like me. My consultant is happy for me to continue long term provided I have regular bone scans. Although I’ve tried the strict endo diet it had no real effect. For me the only painkillers that touched it were nerve painkillers - in my case gabapentin. On this forum, you may read lots of negative stuff about the injections but there are quite a few of us who cannot live a normal life without them. I would ideally not want to put chemicals in my body but this disease isn’t ideal. It may be worth reconsidering. Good luck. 🙂

Reply

Thank you so much for your advice and taking the time to reply. How often do you have the injections, is on a regular basis? I think I am perhaps being a bit naive that I'll be able to manage long-term without chemical intervention. Thanks again.

Reply

I have the monthly injections as they are supposed to be more effective than the 3 monthly. However, because my metabolism is fast, I’m allowed them every three weeks instead. I’m due my next on Monday and can really tell! I was so desperate when I first had one and expected the worst but couldn’t believe the difference.

Reply

First of all, if all the laparoscopies you have had performed only provided relief for a little while, I wonder how good the surgeon was. Only having laparoscopies with some of the best can help find long-term relief and it should be EXCISION.

As far as the other options go, some of them should not be seen as terrifying.

Dienogest- or norethisterone acetate-only pills have proven very effective to shrink endometriomas and reduce endo growth.

If you just want to go naturally, I cannot advise much other than visiting the best website on endometriosis nutrition I know (healendo.com).

Ibuprofen is the only NSAID that is not to harsh on the stomach, but with a stomach ulcer anything can be upsetting. I suggest you look into Epsom salt baths and CBD oil as options as well.

I cannot really suggest much more than that :(

I can however tell you a hysterectomy is NOT a solution because 1) endo grows even without a uterus or ovaries producing oestrogen and 2) a total hysterectomy can only help in case of adenomyosis.

Reply

Thank you so much for your advice. I do think that a hysterectomy will not be a solution as my bowel is so badly affected. I already do Epsom salt baths and they are wonderful - if I only I could stay in them all day! I have tried the progestin only pills in the past and while they do help my symptoms they affect my mood so badly (not great with 2 small kids). I will take a look at the nutrition website - thanks again.

Reply

Hi there.

Sorry to interject, I was just wondering where you gained your information about endo growing without your body naturally producing oestrogen? Was it from a consultant or reliable medical website or paper?

Thanks x

Reply

The pathogenesis of endometriosis is still partially unknown, however it is well-known that endometriosis grows during menopause as well, when the body is not producing oestrogen or very little of it, therefore removing one's ovaries will not put an end to endometriosis, which might grow back. Yes, if you remove the ovaries and perform an excellent excision surgery and leave no endometrial tissue behind, it won't grow back again for years, but the chances of it growing back are not that low.

Reply

Thanks for your reply. I appreciate your insight, are you a medical professional yourself?

Reply

Not quite, but I have gone to med school

Reply

I have similar problems as you. I would start with taking probiotics, l-glutamine and Manuka honey which helpes to fight H pylori bacteria that causes stomach ulcers. Manuka honey is not cheap but it's worth every penny. I also suggest taking food intolerance test- you might be surprised with results. I was intolerant to eggs - which I ate every day. Also to some fruits, nuts etc. I was always bloated and in so much pain. Bone broth also helps with IBD.

healthline.com/nutrition/ma...

I am taking Visanne (progestin pills) for about 2 months now but I am also 4 weeks post op so I can't really say how much the pill will help with the pain. Try to do some reading on it - a lot of women experienced improvement while taking these pills.

I hope you'll start feeling better soon.

Reply

Hi GreenF. I haven’t been on here for a while but read your post and felt compelled to help and offer some advice as my endo sounds similar. I was on the pill tricycle. I had terrible bloating, bowel pain, diarrhoea etc fainting during periods. I was on NSAIDs. When on NSAID your GP should always prescribe a PPI as well, such as lansoprazole, to protect you stomach from ulcers. There are still more pain “ladder” options open to you. You could ask to be referred to a pain specialist. If codeine helped but caused constipation, then adding in a sachet of laxido twice day will help. If you still can’t tolerate, then other opioids could be considered such as tramadol , oramorph, fentanyl patches etc- all of these have side effect of constipation but that is easily managed with laxido usually. As someone else has suggested, gabapentin is also a choice or amitriptyline at night- for neuropathic pain.

From the point of view of injections, I was in a similar situation. My consultant suggested I try it for 6/12. I had one every month - zoladex. This helped me enormously and my symptoms practically disappeared. I was 100% better. It’s not the same response for everyone of course, but it worked for me and then I decided to have a full hysterectomy. With HRT after. I was 36 at the time. HRT for 5 years then started to get a few bowel pains and what felt like period pains. Stopped HRT and have been fine since. Again, not always the same for all. A lot of my endo is on the bowel and described as “sticky”- I have to have 3 yr colonoscopy screening due to early terminal bowel CA for my Mom. I’m now 47 and have been fine. Although my daughter was diagnosed with it aged 14 but because I saw the signs early, I made sure she was referred and treated quickly. She now takes the pill every day (microgynon) and has small breaks in some of the holidays. So Xmas, then now then May. We have reduced the time she is off to 4 days and she is much better managed. She is also on co- codamol and naproxen for when she gets pain. There is some suggestion now that there is no evidence for coming off for breaks, and we have certainly limited it to 4 and seen a heat improvement in her. Lap was a no-no as symptoms was enough for a working diagnosis and the more surgery, the increased likelihood of adhesions.

I hope all this helps. It sounds like you are doing a lot of good things already. Keep persevering with it and don’t accept dismissal from a clinician. You’re the expert in your pain, they are there to help.

I wish you all the best. Sometimes the simple things help too, hot water bottle, heat pads, cold pads, mindfulness, exercise. Take care.

Blessings. Elise xx

Reply

Thank you so much Elise for taking the time to respond to my post, it is greatly appreciated. Please can I ask, why did you decide to go for the hysterectomy if the zoladex was helping? I have been warned that taking HRT will increase my bowel symptoms, so I'm nervous about the idea of a going into menopause cold turkey. How have you managed the menopausal symptoms, have they been easier or harder than you imaged? I know everyone responds differently, but its good to hear everyone's story. Thanks also for the pain relief suggestions. I am due to see my gp next week so will run a few of these past her and see what she thinks. My mum passed away from bowel cancer 5 years ago, so I can totally understand the whole bowel worry scenario!

Reply

Hi GreenF(I wish I could guess your name!) my hysterectomy was about 10 years ago. I was 36 at the time. Now 47. At that time my girls were little and seeing me suffering. I fainted once when they were at their swimming lesson. So we decided that it was more important to be able to look after children I had already, than have more (I had wanted more children ) so as the zoladex worked so amazingly for me, I decided that, that was the answer for me. X

Reply

Also, sorry to hear about your mom. How old was she? How old are you?

I also forgot to say that the option of zoladex was only for 6 months and no longer but it sounds like things have changed now.

Reply

Thank you so much. I'm 43 now and my mum was 65 when she passed away. It's crazy, how much it's made me worry about the bowels symptoms caused by endo. I hope your mum is doing ok. There's no doubt, life can be tough! Thank you for sharing your hysterectomy and zoladex experiences. It really has helped me to hear everyone say that it was the best decision for them.

2 likes
Reply

Aw sadly my Mom died aged 46 and I was 25. 😔😔😔

Reply

Oh I'm so sorry to hear that - big hug from me XXX

Reply

Hi there it’s so hard knowing the best course of action I’ve been in such a pickle for years. I’m 41 and have been struggling since a teenager but severally with a diagnosis for 10 years. I’ve been through most drug options and diet changes but have found little benefit or horrid side effects. Mood wise I must admit I struggle and I’m now on an antidepressant. However I always struggled bad with pmt

I started zoladex and HRT about a year ago and it’s been a game changer! My periods obviously have stopped and my pain is manageable. I do get almost period type symptoms with mood changes & some pain when I’m due the injection. I’m stage 4 and have nodules I’d endo in my bowel. My bowel issues are the ones I’m more troubled by and I’m waiting to have possible resection surgery. I have also opted to have a hysterectomy and ovary removal at the same time. I just feel that I’m already in the menopause and I’m currently taking zoladex 3 weekly so why not make it permanent. I know it’s not a cure but hopefully will mimic what I’m doing now. My consultant was clear about the future and was really supportive with my decision.

Best wishes with your future and look around at all options. People opinions are great but remember people are quick to say the bad stuff & not the good bits!

1 like
Reply

Thank you ccsmith! It seems that zoladex is something I should think about. I've been a big believer in holistic and natural medicine (even though I work in the pharma industry!) and I think this may have coloured my view of the injections. I will look into it a bit more. Have you had any bowel symptoms on HRT? I also have a tempestuous mood and after coming off all medication a couple of years ago, I'm finally feeling like myself. Did your mood change significantly when you started zoladex?

Reply

Hi there, I totally understand I was very anti zoladex and my consultant persuaded me in clinic & gave it there & then. I went into a complete panic afterwards & made myself ill for a few days. My bowel symptoms are better than they were but I recon once I’ve had my surgery (bowel resection, hysterectomy & ovary removal) they should improve again. I still get discomfort & urgency when I need to go (my issues are at the lower part of my bowel) I also get frequency when I’m “due on”. My mood is a hard one as I’ve been struggling with low mood & anxiety for some time but I recon the first 10 - 11 months I was the same as “normal” and my antidepressants and HRT were working. Past few months I feel like I’m getting really bad Pmt type mood swings and at times become very low! I’m seeing my gp Thursday as I recon it’s “menopause” as my hair & nails are thinner as well. I’ve started menopause supplements and also trying to exercise but it’s tough. Some of my low mood is due to waiting for surgery. I was promised it would be December last year and I was mentally all ready and now it’s meant to be April but not heard anything.

Please pm me if you want to know more I’m happy to help. I’m

1 like
Reply

Hi Everyone, I just wanted to give you an update and ask your thoughts if possible. I have seen my GP and she has decided to refer me to a BSGE centre in Bristol, which I'm really relived about. I discussed some of the pain options that you all mentioned, however she refused to prescribe Gabapentin or anything similar, as she said the NHS are cutting down on giving them out due to addiction and will only prescribe for diagnosed neuropathic pain. The opiates have also been crossed off the list as she is worried about the effect they will have on my bowel symptoms. The only thing she offered was mefenamic acid, another NSAID, which I remember taking as Feminax when I was a teenager. Hey oh, I'll just have to struggle on with my hot water bottle.

I'm hoping I don't have to wait too long for the appointment at the BSGE centre to come up. I'm planning to discuss both zoladex and hysterectomy with them. I know a hysterectomy may not be the cure I'm hoping for, but the past few months have been so horrific I think I just want it all out! Is there anything else I should be asking them? I've had such bad experiences in the past on dienogest- or norethisterone acetate-only pills, so I'm reluctant to go down that road again. Are zoladex or a full hysterectomy my only options now?

Reply

You may also like...