I had my first appointment with an endo specialist today. I think I'm still in shock at the whole situation to be honest and am trying to sort things out in my head. I've just turned 40 and there's no history of endo in my family. I've been diagnosed with endo and adenomyosis. The endo is between my ovaries and uterus, behind the uterus and has adhered to the bowel. I was given three options and my thoughts are as follows at the moment: 1/ Do nothing - My symptoms are bearable. I take the pill back-to-back but still have the occasional spotting. I experience pain most days (especially during and after eating) and have dreadful bloating and constipation. I can bear this but I'm sceptical with the Dr's claim that all will become well once I've gone through the menopause. 2/ Clinically induced menopause - I'm really wary of this option due to the fact that I have a history of anxiety and depression. I know I'll have to go through the menopause at some point but don't really see the point in swapping one set of symptoms for another for temporary relief at best. 3/ Total hysterectomy - Again, I'm sceptical that this will solve all my problems. I'd rather go through a surgically induced menopause than a chemically induced menopause but it seems like such a drastic step to take. I'd love to hear thoughts from others who have experience of these treatments. Any advice at this point would be really welcome as it all feels so confusing and overwhelming.
Confused: I had my first appointment with... - Endometriosis UK
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It’s a huge diagnosis to deal with. I am 36 and just got diagnosed in July this year. I had endo surgery to remove the endo but I’m on back to back contraception for the bleeding and adenomyosis. I also have the nexplanon implant - apparently 2 forms can help massively.
You have to think about what is best for you. It’s not an easy decision. It’s not something to rush - but potentially look into surgery to help with the endo and consider your options for adenomyosis control that suits you. Just be prepared for the recovery to take longer than they say! I was meant to be feeling far better by now but I had an allergic reaction to the glue and it’s delayed my recovery.
Just think and take time. There is no rush to make your decision. Good luck xxx
Thanks for your response, Kieraface. I'm wondering if I shot myself in the foot by saying that I don't want any children. Excision/ablation wasn't given as an option. I don't want children but a total hysterectomy seems like such a drastic action to take and part of me is thinking 'I can deal with these symptoms' but they could get worse and, judging from the experience of other women on the forum, there's no guarantee that menopause will provide the relief that the doctor seemed so sure of.
Hysterectomy is gonna be on the cards for me in the future due to the adenomyosis but I’m trying to put it off as long as I can. I would discuss excision surgery with your endo specialist. It should be an option for you, but due to age they probably wanted to go down the hysterectomy route as chances are to control adenomyosis you might need one x
I have a similar diagnosis, however I really struggle with the pain. I’m on codeine and naproxen but they barely touch it and mostly just make me feel sick. I don’t want any more children and have had bad reactions to hormonal treatments (mainly progesterone, mini pill) so I’m starting chemical menopause tomorrow with a view to have a hysterectomy. I’m still reeling from the massiveness of it all to be honest however as I’ve already got lesions on my bowel (my uterus, ovaries and bowel are fused together, plus ovarian cysts), I didn’t want to risk future bowel complications if it progressed. I also have family history of ovarian and cervical cancer so at 39, I’m trying to see it that my insides are obviously not working so for me it would be best to remove them.
I totally understand the worry about menopause and depression/anxiety, I’m on the same page there but I’m trying to frame it to myself that this way it is a little more controlled in that I’ll know I’m in menopause not just guessing symptoms etc.
Good luck with whatever you choose, I just wanted to share as I can totally relate to how big a diagnosis it is and it feels quite overwhelming at times x
The weird thing is that the doctor presented the options like he was offering 'Tea, coffee or hot chocolate?' It felt quite bizarre! Sending best wishes. xx
Yes a friend of mine said have you been offered support with the decision. When I stopped laughing I explained it’s taken almost 3 years, umpteen scans, a year with a useless consultant that believed everything was “PMS” (honestly the rage that woman gave me keep telling me it’s just PMS) to get here I just nodded and took the print out they gave me x
Re tone of presenting options: I completely get this! I had a similar experience recently where I went to see gynaecologist about worsening symptoms while I’m on waiting list for a lap, and he opened the convo with “Are you ready for the injection?” (Zero context, tbh I didn’t even know that chemical menopause was an option for me). And it was only after 10 mins of him pushing and me saying “hmmm I’m not sure about this, what are the wider impacts” that he admitted it was menopause, but was v dismissive about the possible side effects. Like you say it felt like the sort of conversation you’d have for a much less serious subject matter.
Ultimately, I don’t think this is the right choice for me (having done my own research into what exactly was being pushed on me) but I’m definitely left facing shock and disappointment about how this has was approached.
Thanks for posting I have my consultant appointment on Thursday and really helpful to see the options they gave you . I’m 46 and recently diagnosed.
I had a hysterectomy after difficult birth 11 years ago and it has definitely not stopped endo. Didn’t know I had it. Apparently it can feed itself.
I’ve stopped HRT so may go on the synthetic one. There are ladies suffering after menopause too.
The adenmyosis will be in your uterus so might help with that? Sounds like it wouldn’t get all of it and you’d need excision or it’s not the whole job?
Did they mention any monitoring scans to see if it grows?
Good luck hun it’s such a huge and personal choice xxx
When you say it was an endo specialist was this in a specialist endo centre?
I've had all of the above, so thought I would add my thoughts. First off it's totally normal to be in shock at this point. We've all experienced years of doctors getting it completely wrong and telling us we're fine only to then find out that actually we've been ill all along. Plus being told you may need major surgery is a big deal. There's a lot to come to terms with.I was told straight away that a hysterectomy was necessary but I think my pain level may have been worse than yours by that stage as it wasn't manageable (trips to a&e to beg for help!). I would add though that I went from manageable to not manageable very suddenly.
I also had excision of the endo nodules plus both of my ovaries were removed (oophorectomy). This is the bit you really need to be clear about because this is what causes surgical menopause. When they say hysterectomy, this technically just means removal of the uterus. So it's vital to know if they are recommending oophorectomy as well.
I did have chemical Meno (zoladex/prostap etc) while I was waiting for surgery to try and help manage the pain. It also gives you some idea of what surgical menopause will be like and whether or not you will be able to cope with it. My specialist said they also recommend it for that reason. In my experience it wasn't the same - it was about 75% of the real thing - but it meant I had some idea what was coming. I was 39 and nowhere near menopause.
In terms of whether or not the surgery helped me, yes it did. I hate that I had to have it, but I don't regret it. There was no other choice. I've got return of disease now (at 46) but I am nowhere near as ill as I was. I will probably need another surgery next year but I'm not having to rush into it because I'm so desperate for relief. I've got deep infiltrating disease in my bowel and it was always going to be a literal pain in the bum.
If you have any questions at all please message me. x.
Yes, they'd remove my ovaries and uterus. Do you think that the return of your endo is less severe having had the full hysterectomy?
I am not anywhere as ill at the moment as I was before I had the surgery when things were at the worst. It's hard for me to describe just how bad things were, but I had bleeding so heavy that I would have accidents and was frequently having to go to A&E for help with pain management. I had no life at all. I would also say that it seems that I've been pretty unlucky having become symptomatic again as the statistics seem to suggest that the majority of women don't if they are put in surgical menopause. But it is what it is. Given the extent of the disease that I had (4 large nodules, extensive bowel and bladder involvement, adenomyosis, a lot of adhesions) it was never going to be easily fixed.
I only found out I had endo when they tried to remove my cervix during the hysterectomy and it is completely fused to my bowel now and left ovary. I know it seems radical but if you don't want children and they can leave your ovaries then you could research a hysterectomy. I am living a nightmare now because of the flooding due to fibroids. If you leave it then it could get worse. They cannot separate mine now. Do your research. I was in no pain either. It's easy to ignore but sometimes it's better to tackle the cause x good luck x
So I’m 33, have one daughter (unsure if we want anymore children at this point), and I was diagnosed as having endo in May this year and diagnosed as having adenomyosis after my endo surgery a week last Friday.
I have a bad history with many different hormonal contraceptions since the age of 15 when my GP first put me on the pill to try and control my symptoms. I’ve also tried the implant. I’ve gone 8 years with no hormonal intervention and my symptoms have not changed since being on hormones, so I’m really sceptical that putting hormones into my body will actually do much positive (especially when weighed up with the negative side effects it gives me - anxiety and depression).
Some people on here might think I’m nuts but I’ve looked a bit into diet and how that could help my symptoms. I’m going to try and steadily adjust what I eat and see if it helps at all, at least enough that my pain is reduced, as I too was offered a hysterectomy after the op last week, like it was tea or coffee(!), and that feels really drastic for me.
Oh dear, this is similar to my story except that I'm waiting to see the endo expert. Thank you for sharing.
It sounds like the options they have given are all quite impactful. Have you thought about getting a second opinion? My sister has had endo all of her life, last time she got surgery nobody mentioned hysterectomy despite it being 4th stage and being on uterus intestine and most of her abdomen. They got in and did excision very attentively and removed all the lesions. It definitely was a complex operation but they tried to keep as much there as they could.and ended up only removing the fallopian tubes.
I follow an endo specialist on Instagram that shows videos from surgeries and explains different issues, I would recommend to find similar accounts if you feel like it. It can help making an informed decision.
Could I also ask how you've found this endo specialist? I found the one I've booked with using a mix of Instagram and research but he's pretty far from me. I called endometriosis UK to ask for info but they send me through a dead end online
I was referred to the EXPPECT team through the NHS (ed.ac.uk/centre-reproductiv....
Hi Tulip
I'm in the same situation, as had stage 4 endometriosis no history in the family soread in the bowel, ovaries, pouch of Duglas, ect...had an laproscopy operation in April, the pain and bloating are still here,nothing changed,even I had excision surgery. As my immune system is compromised from the Endometriosis, I've been battling, Sibo,Streptococcus B,Ureplasma, Gardinella, BV, God know what. Still as I'm currently in natural late stage of Perimenopause doctors whants to treat me first for the rest of the bacteria before deciding what to do.But the options are,diagnostic laproscopy and I will actually agree on full Hysterectomy if they find same amount of endometriosis again. I'm 43. It's a horrible decease and I've been in chronic pain every single day in the last 2 years and I just take any possible options and move forward. My granny had an early menopause at 38 an she was in mental hospital for 3 months but all fine after. Even though have a family history I will take my chances and try whatever is possible to get my life to somehow normal level. Just think about your options and take the right decision for yourself xxx All the best
I had a hysterectomy two years ago, they only removed the uterus, I got the hysterectomy because of adenomyosis which was causing massive blood loss every month I was having constant gushing that would soak a pad end to end and blood clots size of my palm. But the doctor told me hysterectomy is not a cure for endo, even if they remove the ovaries you will require hormone replacement which will feed the endo and he told me he doesn’t advise complete hysterectomy without hormone replacement as he currently had three patients who tried to commit suicide because they were trying to do it without hormone replacement. Some of my symptoms stopped but I still had endo pain right after surgery which my doctor explained would be from microscopic endo that couldn’t be seen during surgery.
oh and I have stage four endo with fused bowel and a four centimetre by six centimetre endometrioma cyst
Hi Tulip in your case I would do the first option, do nothing. As you wrote your symptoms are bearable. Cut the sugar, gluten get to minimum and no alcohol and try to eat healthier and drink herbal teas. If the pills helps you through period pain then why would you go through other options which are much worse. Its just my opinion.... 
I suppose my fear is that things could get worse. I experience pain every day and have problems with my bowel. Things could very quickly become unbearable and I'd rather take control of the situation by intervening with elective surgery than potentially ending up needing emergency surgery.
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