I'm in line for an MRI scan for endo. I have stage IV endo, which was diagnosed by laparoscopy.
In my first appointment, the consultant (BSGE approved endo centre) talked about surgery options ranging from clearance with total hysterectomy and endo removal to simple restoration of pelvic anatomy.
We discussed how I'm almost 42, and my husband and I are in the process to seeing if we would be eligible to adopt.
Endo has been aweful for me with trips to A&E and it's on my appendix, bowel, bladder, and other organs too. I'm attracted by the idea of clearing all of the endo along with total hysterectomy because there's only 8 years before the average age of menopause (50) anyway, and I'd rather have one surgery than multiple surgeries (already had a lap to check for appendicitis and diagnostic lap for endo).
I think it's too early to wish the whole issue gone because I've not had the MRI yet (I will have the MRI in a couple of weeks). The consultant said the team would give options and a recommendation.
I wonder if it's ok to enter menopause a few years early?
Can a woman still have the capability to have an orgasm after a hysterectomy?
Hi.....I'm in a similar situation to you, six years older, waiting for MRI before MDT meeting. I'm already diagnosed with bowel endo, ovarian cysts and adeno.
I'm going to have a complete hysterectomy and get as much of the endo removed as possible.
Some women go through the menopause early naturally, so I wouldn't worry too much about that as long as you take something to help keep your bones strong.
I'm just wondering why you would think it would be difficult to achieve an orgasm after a hysterectomy?
Hi. How are you getting on? My mri was normal so if it hadn’t been for the large chocolate cyst attached to my ovary, bowel and abdominal wall they wouldn’t have done surgery and found the stage 4, deep infiltrated endometriosis and full frozen pelvis that didn’t even slightly show up, the bsge specialist couldn’t even find it after the op ( he was the man to go to in our region and said even for someone as experienced as he was you can’t always se it and I’m a good example of why surgery is still the best way with end). For the hysterectomy a lady in at the same time as me had one and she was in her late 30’s and it was down to endometriosis and fibroids, kept an ovary if I remember rightly and was going to take hrt so if they suggest it it’ be because they think it’s in your best interests. It doesn’t always put a stop to the endometriosis pain though especially when it’s on other organs. I haven’t forgotten to dig out the endo diet book but we’ve had a new floor going down so haven’t had a chance to get it. Xx
Hi Tillyfloss,Thanks for sharing part of your story. 🌸
How are you doing now?
As for me, I feel like I've "hit a brick wall" of fatigue.
I'm taking duloxetine to reduce pain, but in these first days, it's making me feel very tired an a bit nauseous. I've heard it should calm in a couple of weeks.
Next week,I'll start decapeptyl (chemical menopause) with add-back HRT. The consultant said it should help reduce to pain while I wait for surgery. I'm trying not to worry about it, and to just wait for the advice after the MRI scan. But, I worry anyway because it's significant in my life.
I know exactly how you feel when you say that you've "hit a brick wall" of fatigue, as I have experienced the same. I don't think people really understand what a debilitating disease endometriosis is and how it can affect your qualify of life so massively. Sending you lots of strength your way and I hope you feel much better very soon. Be kind to yourself 🌺🌺🌺
This is my current state so if you’d like any info fee free to get in touch. I’d say the decapeptyl has certainly calmed all the endo symptoms down. I would prepare yourself for the possible side effects of body aches, headache and fatigue! But a lot of that settled within 6 weeks. I tried HRT-free for about 3 months but I couldn’t handle the night sweats (and attached anxiety) and insomnia. HRT patches have worked well to counter those and now I’m in a relatively balanced place. I’m on a wait list for a hysterectomy as I’m 41 and have had two children so happy to say goodbye to the uterus-this is also my 3rd round of endo since the age of 25 (previously cleared with surgery). I hope you find further relief with the injections. PM me if you have any questions or just want to talk. X
Hi Mheulgio, Thanks for telling me what it's been like for you. Three rounds of endo sounds like a lot - you've had plenty to deal with there!
I guess I'm lucky that I have Decapeptyl and Tibolone as a "package" to start together next week. It sounds like the Tibolone should make it more livable.
Thanks for telling me about the fatigue - I already have fatigue from endo (and possibly an infection?), so this is going to be something tricky. I'll give it a try though, and see how it goes.
Same to you, go ahead and PM me if you like. 🌿
I will try to be patient and not pre-judge what the consultant will recommend for surgery, but it's hard not to think about it.
It’s all very tricky and a constant balancing act between what works for you and what can be tolerated by you.
Regarding the fatigue I just wanted to say in my experience; I also had ridiculous fatigue with the endo but the addition of the Decepyptl really was another level for me. It reminded me of the worst jet lag- I use to have to pull over and sleep for 10 minutes on my drive home from work. And would just pass out asleep in the middle of the day with no warning. But it did settle down after 6 weeks or so. I just wish someone had given me a heads up it could be that extreme as I looked to it as a reprieve and almost didn’t get another injection! But I’m glad I stuck with it. 🙂
Hi Mheulgio,Thanks for the heads up on the scale of fatigue we're talking about with the Decapeptyl. They say forewarned is forearmed. 😉
If only coffee could solve this! Unfortunately, I've had to forego the coffee because it was causing heartburn for me. But, I've had some sneaky black teas, and they've been ok.
Did you find any coping tricks for fatigue? Well, you did mention the power nap.
Exactly my thoughts! Thanks to all -the-possible-ever-existing-Gods I can still drink coffee!! Saves my bacon now!
To be frank, at the start I had to just give into it. Power napping and resting. Luckily I work 5 hour days so don’t have to pull a full shift. I took up an old hobby of knitting to keep my mind moving but some days when that was too much. But as my body adjusted it did get better and now I’m at a reasonable level of energy considering. I still take a ‘rest’ for about an hour in the afternoon but I don’t NEED to nap! Fingers crossed it won’t hit you that hard-not everyone gets it! But as you say- forwarded is for-armed!
Hello! I had a laparoscopy for excision of endometriosis just 4 weeks ago at a BSGE approved centre. Previous to that, I had a couple of MRIs, last one in January. The MRI showed bilateral endometriomas, a nodule on my bladder, intraperitoneal complex fluid with thick septa (they weren't sure whether it was a hydrosalpinx or endometriosis/ adhesions) and they thought I had the bowel affected by endometriosis too. And I also have adenomyosis! I had been on Decapeptyl and Zoladex since last December. Well, I was surprised to find out that after my surgery, the surgeon came to talk to me and told me that my bowel was fine, but (in addition to the findings in my MRI) I had endometriosis affecting my ureter (nobody had told me that before and the MRI didn't mention it either) and they had repaired it. Also my left side was far much worse than my right side and the MRI seemed to indicate otherwise! I am not an expert but based on my experience the only way to find out more about the extent of endometriosis is to have a laparoscopy, but of course having an MRI helps planning the surgery. If I hadn't had my surgery (they gave me the option of continuing on Zoladex) I would have never found out about my ureter and I could have lost my kidney, if untreated. At the moment, I don't want to have a hysterectomy because I want to try to get pregnant. I am 37 and I have suffered recurrent miscarriages and even lost a baby but I haven't given up! However, if I couldn't get pregnant and the endometriosis continues to be as debilitating as before my surgery, I would consider the hysterectomy. My husband and I have also looked at adoption but we don't think we qualify. I don't know if my experience with MRI will help you in anyway. All best wishes xxxx
Hi Eternal,Thanks for telling me about how things have gone for you. It's good to hear what the experience was like from another perspective. I'm really glad to hear you've had your kidney protected now, by looking after the ureter! *Whew*!
My story kind of went in a different order because it all started with a diagnostic lap for suspected appendicitis - turned out to have been a ruptured endometrioma. At that point, I had assumed I'd had a "diagnostic laparoscopy" and that step was done. Nope! They'd simply checked I didn't have appendicitis.
Later, from A&E, I was referred for a diagnostic laparoscopy & treatment for endometriosis. I got the diagnosis for stage IV endometriosis, but my case was too complicated to treat the endo that day.
So, they referred me on to have an MRI so the gynaecologist and colorectal surgeon could plan for surgery. And the waiting times was given as 4 months.
I ended up at my first appointment with a consultant after asking for a private referral in the hopes of speeding up the MRI. It turns out that through the private route, an MRI can be done in 12 days Vs NHS 4 months.
I wanted to speed up the process because I'm not doing ok with the symptoms - I'm having to take time off work when I'm in too much pain or the fatigue is too great.
Now the consultant has the images and findings from my diagnostic lap for endo, and will soon have the MRI scan results too.
In hindsight, it would have been amazing if they could have done the MRI before the laparoscopy to treat the endometriosis. However, that's just not the order things were done in for me.
So, I'm wondering now what the advise from the surgeons will be when they review the images from the lap and the MRI results.
I see! Yes, my case was different because the endo specialist who saw me wanted me to have an MRI first, then discuss my case with the endometriosis MTD team (GYNAE, urologist and bowel surgeon) and then plan the surgery accordingly. So I never had a 'diagnostic laparoscopy' but just a laparoscopy to treat the endometriosis. I am sorry to hear about your journey :-(I hope the surgeons can review your case soon and that you find some answers and a plan and that your pain and symptoms get better soon. Take care
Hi JuneI just wanted to give you my experience of my hysterectomy BSO. I had this with a non BSGE surgeon. The Surgeon was intending to treat Endometriosis aswell as Adenomyosis. I decided to ho for the full hysterectomy as I had an endometrioma history on pathology aswell as ovarian cysts.
I would not advise anyone to go for a hysterectomy under a Surgeon who is not BSGE accredited if they have prior knowledge to BSGE and that they have Adenomyosis or Endometriosis. After about 6 to 8 months intercourse became unbearable for me in that my vagina feels changed at the entry point. Thus feels like extra skin and too tight. Lots of foreplay and widening techniques have not yet helped.
I feel my vaginal canal is at an unusual angle.
I have saw my Gynaecologist and 2 BSGE accredited Surgeons who cannot find anything with my vaginal vault other than I had a large granulation removed from over healing at the cuff.
The entry point is my sore point, I'm thinking of going back to BSGE Surgeon 1 because I believe he will look at this for me given that I dont believe its Endometriosis related but it was part of what I had originally discussed with him Surgically after my Hysterectomy left me with considerable Endometriosis after our Provinces Top Surgeon did my total hysterectomy a year prior.
No one should be losing their sex life due to these operations. I am obviously one of the extremely unfortunate women who had No BSGE knowledge, no support prior to hysterectomy in an Endometriosis Community and just a bad Surgeon who claimed they could treat Endometriosis if it was found. This Surgeon left me with a blank pathology report at hysterectomy. I persevered with my symptoms and got to the BSGE Surgeon a year later. I knew I had organ wide and extensive Endometriosis that needed to be removed.
Losing my sex life has had extremely tough consequences. The pain I experience on penetration is like something from the London Dungeons.
I'm not internally dry t all and have add back HRT in bio identical Estrogen 'Estrogel Pump'gel hrt which covers moods, sweats etc.
No ovaries I shd say.
I really loved our sex life and I am a sexual person, nothing wrong with admitting that. It was always a pleasure never a chore.
I'm looking into Vaginal dilators and possibly pelvic PT/trauma expert who can assess the area and see if she can help me.
If I had have thought I'd lose my sex life I dare say I'd have kept the cervix and womb, yet I could say I should have had hysterectomy under BSGE, alot of shd'a wd'a dones.....
Take Care and good luck.
Always good to have the MRI but likely alot of Endometriosis wont show up.
I definitely needed my problem ovaries gone and if I didnt I wd have had them removed a year later probably with Endometrima cysts on em!
Hi BetterDayz,You've really not had a good experience there. Thank you for telling me about what it's been like for you. I hope that in time, things will come together a bit better for you.
At this stage, I really don't know what the full pros and cons of more conservative Vs more aggressive endo treatment tend to be. I can only guess that I'll be trying to learn what I can after I see my options laid out and a recommendation too. I'm being seen at a BSGE accredited endometriosis centre, so I hope they will propose something reasonable.
Absolutely, You will get the most conservative advice I'd say for your age. Most versed Endometriosis Surgeons are about organ conservation yet you have it on your appendix I think you said so that might come out, if it's looking fibrous and problematic it may be whipped out as it likely wd act up in near future.
The balance of conserving versus multi operations is a big one, I had the same thought too.
Good luck. I didnt keep my cervix and I dunno if others who did could comment and help you. If I do manage orgasm 🤪 just to let you know they are still very intense and 100% not affected. I just have issues getting in 🙈
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MRI - did it show endo for you?
are decapeptyl injection side effects of menopause the same as a real menopause
Anyone with blocked ureter/kidneys?
How soon did your endo return after surgery to remove it?
Hysterectomy in your 30's?
